I used to work in neonatal care; I used to think I knew what NICU was like.
I had no idea what NICU was like.
I thought I understood the importance of enabling mums to be mums in neonatal and intensive care.
I had no idea of what it was like to be a mum in neonatal intensive care.
I used to think how amazing it must feel to take your baby home and that when mums walked out of the NICU doors they said goodbye.
I now know that NICU never leaves you and the emotions that you feel as you leave are often complex and conflicting. I used to work in NICU, but I had no idea what it was like.
You see, as an Occupational Therapist I had worked with premature babies in NICU, critically ill children in paediatric intensive care and children with life limiting conditions. In these settings a considerable part of my job was to enable parents to fulfil their occupations as mums and dads. Often teaching students of the importance of giving parents the opportunity to be parents I never imagined that I would be that mum, the one who stands by watching and waiting, feeling helpless.
Pregnant for the first time my GP asked which hospital I would like to be booked into, I responded without hesitation. If anything was to go wrong I wanted to be at a hospital where I knew and trusted the neonatal services. Little did know that six months later I would be walking through their doors as a NICU mum and that I would hardly recognise the medical environment where I had once worked.
Alarms, bells and buzzers – part of the background noise for staff; but as a mother beside an incubator the alarms and buzzers could cut straight to your very core.
Hand washing – for staff part of the everyday routine; for parents not only a delay in being able to see their baby, but a time where anxieties around infection are felt or a time to worry about how your baby will be when you see them.
The ups and downs of NICU – part of the course for NICU staff, all to be expected; for parents, even the smallest bump along the way can hit you hard.
Touching, handling, changing and holding – second nature to an experienced NICU nurse; scary, frightening, overwhelming and precious to parents.
I used to think I knew what NICU was like; I had no idea.
As an Occupational Therapist, tiny babies, poorly children, anxious parents, lines, machines and tubes was what I did.
As a mother I did not recognise this medical world in which I had worked and had felt so at home. The machines and monitors seemed alien to me, the smallest bump hit me hard and the sound of alarms and buzzers still stop me in my tracks. Becoming a mother, but not able to be a mother, I felt lost.
I thought I understood the importance of enabling mums to be mums in neonatal and intensive care. I did know the importance – it is vital; but I had no idea of the lasting trauma and the overwhelming sense of emptiness and loss mothers can experience in NICU.
I reflect upon my journey often in my work today, knowing that my intervention and care for families is improved through empathy and understanding.
To know and understand a parent’s journey through NICU and beyond is key if we are to truly offer the right support and care. Only those who have been there though, those of us who have experienced NICU first hand can truly understand, which is why speaking openly and honestly about our experiences is so important, together raise awareness one step at a time.
Catriona Ogilvyhas worked in health and social care since the late 1990’s.Qualifying as an Occupational Therapist in 2002 she has worked in a number of large teaching hospitals treating children and young people and caring for families.Catriona was chair of the College of Occupational Therapists Specialist Section for Children and Young People (2009 – 2011) and founded The Smallest Things Premature Baby Charity in September 2014 following the premature birth of both her sons. Alongside her charity work now, Catriona is still a Children’s Occupational Therapist, working largely in thecommunity and specialising now in Special Educational Needs.
When I was younger I always thought that giving birth and breastfeeding, although challenging, would be no problem for me. I was wrong.
On my third hospital admission for raised blood pressure I was properly fed up. At 32 weeks I had already been signed off work and my due date seemed an age away. On 1st May (32 +4) I woke to pains in my chest and the sensation that I was drowning. I pressed my buzzer and from then on my day was going to take an unexpected turn. Small traces of protein had been found in my urine the night before, but now the situation has worsened to full blown preeclampsia. After reams of tests on me and the baby my consultant came to the ward to tell me that my baby would be born today by caesarean section. Still trying to process this I was then told that my little helpless baby would most likely have to be transferred to another hospital due to his gestation. I was devastated and in a state of shock.
I was transferred to the labour ward and hooked up to monitors for me and my baby. I was so swollen (which is why I felt like I was drowning!) that they couldn’t get any lines in me. The anaesthetist was called and they had to ultrasound me to find me veins. I knew I was in trouble when the anaesthetist told me he would normally put in a local anaesthetic first before inserting a central line into my wrist but he ‘didn’t have enough time’.
My blood pressure was creeping higher and higher (210 systolic at one point) and the doctors administered magnesium sulphate and various other drugs to try to lower it enough for it to be safe to go to surgery. My blood pressure finally dipped and then the worst news was about to be announced. Due to how swollen I was and the urgency of the situation I was going to have to have a general anaesthetic. I was whisked into theatre terrified that either my baby or I wouldn’t make it and we would never see each other.
Alex was born minutes later at 1.05pm, a teeny 3lb 4oz. Alex came out fighting and after a bit of help he was breathing on his own – this was crucial as it meant that he could stay in the same hospital as me.
I woke some time later hooked up to machines and on constant watch. I wasn’t allowed to move for 24 hours – which meant I couldn’t see Alex. A neonatal nurse came through to see me with a picture of my little baby boy in his plastic box. It didn’t seem real. I don’t remember much of that first 24 hours as I was so unwell.
Alex, despite his size was remarkably well. By the time I saw him the only tube he had was his NG tube for his feeds. He was a miracle. I had my first skin to skin with him, he felt like a tiny bird on my chest. His skin was see through and I was told it was best not to stroke him as it could hurt him. That night on the maternity ward I was presented with a breast pump, during the first 24 hours I had agreed for Alex to receive donor milk (for which I am eternally grateful for) until my milk came in. I sat on the edge of my bed in an empty side ward (probably reserved for Mums who didn’t have babies with them) hooked myself up and watched as the machine whirred away. Unsurprisingly, nothing happened yet I was told to persist at regular intervals including during the night.
With every day my amazing baby boy grew stronger but my milk supply still wasn’t coming in. Even after 20 minutes or more on the pump I would only get 10-20 mls combined, it was soul destroying. One day in that first week my community midwife came to see me and I happened to be pumping at the time, I was engrossed in the conversation rather than obsessing about the minuscule amount in the bottles and before I knew it I had nearly filled them to to top. I was over the moon, I had cracked it! Later that very same day I received the news that Alex had dangerously high calcium levels and would have to commence with a low calcium formula. I think the shock of this news and the fact that I felt like my milk had made him ill shut down my supply almost entirely. I persisted for another long 12 weeks pumping and breastfeeding when he could manage to but in the end I had to admit defeat when I couldn’t keep up with demand.
Twenty-three long days after Alex was born we got to bring our beautiful boy home. He’s now two years old and is an absolute delight. He hasn’t suffered any ill effects of being born premature and he is truly our little miracle.
I wanted to tell my story to help encourage other Mums who maybe didn’t have the birth or breastfeeding journey that they hoped for.
After a normal start to my pregnancy, I was getting used to the feeling of being pregnant and my proud baby bump had started showing. We had a few moments 26 weeks in where we went to the hospital due to reduced foetal movements but were reassured each time.
On the 19th July 2017 the movements had reduced again, so we visited the hospital confident that we would be sent on our way feeling like we had wasted valuable hospital time. After observations things seemed different and the midwife confirmed my blood pressure was dangerously high and our baby was in distress. In only minutes for our safety it was decided our baby was to be delivered by emergency c-section.
At 4:57am on the 20th July our daughter Cedar Rose was born and immediately taken away to the neonatal intensive care unit.
No cry, cuddling or congratulations. No “she’s beautiful” and most importantly no sign of taking her home.
There’s no doubt I was in shock from not having the opportunity to adjust to Cedar arriving so quickly. My husband, whilst struggling with it all, took control of the situation and started to phone the family and work. Taking control was his way of dealing with it, but I could see how scared he really was for our new little family.
We kept her arrival a secret from anyone who didn’t need to know, just in case something bad happened. Throughout the day I slowly realised the seriousness of the situation and that my baby wasn’t very well.
I was completely naïve in thinking we were going to be able to hold our child any time soon and we waited a week until we were able to cuddle her.
Cedar spent 89 days in hospital and faced many complications such as brain bleeds, a heart murmur, transfusions, constant x-rays and chronic lung disease leading to oxygen support. Worst of all we experienced her having apnea and bradycardia where she would stop breathing, dropping her sats to dangerous levels and then having to prompt her to breathe again. There were days when she was fit and healthy and others when she seemed to be going backwards. It truly was a rollercoaster of emotions.
We spent as much time as we possibly could with her and learning how to care for her even whilst my husband had to go back to work. The week before discharge we were told that she would be needing oxygen support at home. I didn’t initially care about bringing her home on oxygen as I just wanted our new life together to start properly; to have the opportunity to be alone with her without being observed.
The first 6 months of her home life we needed the additional oxygen support, which meant constant home visits and check-ups, but mostly the restriction of going out and meeting people through fear of catching an infection and being back in the hospital. Even after the oxygen was no longer required I only had 3 months of my maternity left to enjoy my Cedar as a ‘normal’ wire-free baby would be.
Having to return to work and hand care of my little girl over to someone else earlier than should have been expected if things had gone to plan broke my heart.
I am so proud to be involved with helping future families in this situation to secure the extra time that they need, and even prouder of organisations and employers like mine who have have signed up to The Smallest Things ‘Employer with Heart’ charter, changing existing parental leave policies to extend paid leave for staff, like me, who have had a premature baby.
With huge thanks to Kayleigh for sharing her story and for championing change within her organisation so that mums and dads can take the extra timethey needfollowing premature birth andneonatalintensive care.
Nationwide Building Society has become the first high street financial services provider to sign up to our Smallest Things Employers with Heart charter, following a major change to their premature birth policy as they continue their commitment to providing family-friendly employment policies to all employees.
While families look forward to spending time together this summer, parents of premature babies face agonising waits beside incubator units and many fathers and partners have to return to work, separated from their baby who remains in neonatal intensive care.
Signing up to The Smallest Things Employer with Heart Charter, Nationwide is supporting their staff to be with their babies when they most need them.
Nationwide is offering extended maternity leave to employees when their baby is born before the 37th week of pregnancy
The policy provides second parent 4-weeks hospital leave to support their partner and family
Policy designed in consultation with Nationwide Group Staff Union (NGSU) and employees who’ve had children prematurely and is available now to all employees who need it
An initiative led by the NGSU, the new policy will see extra support given to employees who
have babies before the 37th week of pregnancy. It means that employees can focus entirely on their family, during a difficult time, without the worry of having to return to work too soon.
Announcing the news Faye Whitmarsh, Nationwide’s Head of Culture & Engagementsaid: “Becoming a parent is an exciting time, but we know it doesn’t always go to plan. Our premature birth policy provides greater support for families when they need it most and we’re delighted to be recognised as an ‘Employer with Heart’ by a wonderful charity. We’re proud of the fact this policy was designed in partnership with the NGSU and Nationwide employees who recently experienced a premature birth. We hope that other employers will review and update their premature birth policies, given the extra support it can provide families.”
Signing the Employers with Heart Charter demonstrates Nationwide’s continued commitment to a family-friendly working environment and sits alongside other family-focused policies such as; family support leave and bereavement leave.
Just days after the Prime Minister announced government plans to consult on the introduction of neonatal parental leave, giving families one additional week of paid leave for every week their baby spends in hospital, Nationwide is leading the way, providing support for parents like Laura Rowe, mum to twins and Nationwide employee:
“My twins spent their first 103 days in hospital having gone into labour three and half months early. I took three months of unpaid leave from work to have more time at home. I’m delighted to have helped design Nationwide’s new premature birth policy. It is such an emotional time but being able to focus entirely on your family and not worry about going back to work early will be a massive relief to families going through this in future.”
Welcoming the news, Catriona Ogilvy, founder and trustee of The Smallest Things, said: “We are delighted that Nationwide has created a policy that recognises and supports families of premature babies and to award them our ‘Employer with Heart’ accreditation. The policy will provide parents with precious extra time to bond with their babies and be at home for longer with them, especially important during a potentially traumatic and distressing time. As the government announces its consultation plans on extending parental leave, we urge them to look to Nationwide as a leading example of compassionate policy change for mums, dads and partners going through terrifying times.”
David Linden MP, Member of Parliament for Glasgow East, Chair of the All-Party Parliamentary Group for Sick and Premature Babies, said: “Hats off to Nationwide for leading the way and signing up to this amazing scheme. Nationwide has now laid down the gauntlet to other financial service providers and I hope they will quickly follow suit. The birth of a premature or sick baby is an incredibly distressing time and it’s important that all employers recognise this and give their staff the support they need – just as Nationwide has done.”
Thousands back the campaign
The Smallest Things premature baby charity has campaigned for extended parental leave for mums and dads following premature birth since 2015. More than 340, 000 people have now signed the petition calling on government to extend paid parental leave for parents following premature birth and the charity was instrumental in the government announcing their 2017 Mothers Day pledge to introduce new ACAS Guidelines on how employers could best support staff whose babies are admitted to neonatal care.
Employers with Heart
The guidelines did not go far enough though and in February 2018 The Smallest Things launched the Employer with Heart charter, asking business not to wait for government to make this change, but to extend leave now for their staff whose babies are born premature.
For more information, please contact us at firstname.lastname@example.org
The Smallest Things have welcomed Theresa May’s announcement today that government will consult on plans to introduce neonatal parental leave, giving families one additional week of paid leave for every week their baby spends in hospital.
Announcing plans for the neonatal leave the Prime Minister said: “Parents have more than enough on their plates without worrying about their parental leave running out and having to return to work before their precious new born comes home.”
“That’s not fair and it’s not right. So we’re also proposing a new neonatal leave and pay entitlement to make this time a bit easier for parents whose babies need to spend a prolonged period in neonatal care.”
Catriona Ogilvy, Smallest Things Founder and Trustee, welcomed the news: “We are thrilled that the prime minister has announced plans for extending paid leave for parents during a neonatal stay and thank her for listening to the experience of parents first hand.”
“No parent should have to worry about work or finances whilst their new born baby remains in intensive care. Families need this additional time to be with their baby in hospital and to recover from the worry and trauma that having a premature or sick baby brings. We urge the government not to delay on the consultation and to bring about their planned changes as soon as possible for the thousands of families in the UK who need this extra time now.”
Thousands back the campaign
The Smallest Things is a premature baby charity that has campaigned for extended parental leave for mums and dads following premature birth since 2015. More than 340, 000 people have now signed the petition calling on government to extend paid parental leave for parents following premature birth and they were instrumental in the government announcing their 2017 Mothers Day pledge to introduce new ACAS Guidelines on how employers could best support staff whose babies are admitted to neonatal care.
Employers with Heart
The guidelines did not go far enough though and in February 2018 The Smallest Things launched the Employer with Heart charter, asking business not to wait for government to make this change, but to extend leave now for their staff whose babies are born premature.
Organisations from across the UK, employing tens of thousands of staff, have become Employers with Heart, supporting their workforce during difficult and uncertain times.
“It’s so important for new parents to feel supported. In that moment, everything else takes a back seat and it’s wonderful that Sony Music are acknowledging that by introducing this.” Paloma Faith on the news that Sony Music had signed up to The Employer with Heart.
But not all employers have taken up parents requests to afford them this additional time, leaving families devastated. Only legislation from the government can assure that all families have the support they need at this critical time for them and their and babies.
Catriona added, “We look forward to the governments consultation and will work to ensure that the specific needs of premature babies and their families are fully supported in their plans.”
For further details or to contact The Smallest Things premature baby charity, please contact email@example.com
Digital media agency Clock, which employs around 40 people, has pledged its commitment to supporting the unique needs of premature babies and their families by extending parental leave for employees who give birth early.
Female employees of Clock who give birth prior to 37 weeks’ gestation will be granted extended maternity leave at full pay by the number of days their baby was born early. Fathers and partners will receive an extra two weeks’ leave in addition to their paternity leave.
Welcoming the news, Catriona Ogilvy, founder of The Smallest Things, said:
“We are delighted that Clock has signed up to our Employer with Heart charter and will give parents of babies born premature the extra time they need. Visiting a fragile baby on a neonatal unit for weeks, sometimes months, is terrifying and shouldn’t be counted as maternity or paternity leave.”
Clock joins a growing list of Employers with Heart who are supporting The Smallest Things campaign to extend paid parental leave for staff whose babies are born premature.
Rob Arnold, MD of Clock, said:
“Parents facing the worry and uncertainty of visiting their premature baby in hospital should not spend that time as maternity or paternity leave. We understand that premature babies need more time; time to develop, time to grow and time for parents and babies to bond at home after neonatal intensive care.”
More than 330,000 people have signed a change.org petition calling on Government to extend paid parental leave for mums and dads of premature babies and The Smallest Things continue to urge Government to make this change, so that all families have the time they need during and after neonatal intensive care.
Nina Gilbert, Head of Client Services at Clock, explains why this policy change means so much to her:
“As a parent to a baby born at just 23 weeks and weighing only 420 grams, I have first-hand experience of what it’s like to have your world turned upside down following the birth of a premature baby. I spent six months in hospital with my son, Harrison, and went through a great many ups and downs on the NICU rollercoaster. The additional financial strain this experience puts on a family should not be something else for parents to worry about, so I am extremely proud that my employer, Clock, have now agreed to sign up to the ‘Employer with Heart’ charter to support other parents who may find themselves in this situation in the future.”
More and more employers are making this change.
For information about the Smallest Things Employer with Heart charter and how to sign up click here.
THE SMALLEST THINGS SIGNS OPEN LETTER TO GOVERNMENT CALLING ON PUBLICATION OF INTERNAL REVIEW INTO PARENTAL LEAVE FOR PARENTS OF PREMATURE, SICK AND MULTIPLE BABIES NEEDING NEONATAL CARE
The Smallest Things has today joined forces with Members of Parliament, David Linden MP and Rachel Reeves MP, together with charities Bliss and TAMBA, writing an open letter that urges business minister Kelly Tolhurst MP to publish the long-awaited findings from a government review into parental leave for families of premature, sick and multiple babies.
Catriona Ogilvy, founder and chair of trustees of The Smallest Things, added her signature to the letter saying:
“While some employers are taking the lead in supporting working parents of premature babies by signing up to our Employer with Heart charter, the government has been slow to take action to ensure all families of premature babies have access to extended leave. We urge the government to act now so that all parents have the time to bond with their babies and have a better chance of returning to work successfully after the trauma of time on a neonatal unit.
“There are thousands of babies receiving specialist care in neonatal units today, which means terrified parents worrying about their little ones’ health and future. We don’t believe work or pay should be added to those worries.”
The Smallest Things has met officials from BEIS (Department for Business, Energy and Industrial Strategy) on several occasions, attended a meeting with Kelly Tolhurst MP in December 2018, and organised for supporters of our charity to attend focus groups so that government could hear first-hand what it’s like to have a premature baby or babies in neonatal care. In addition, The Smallest Things supported a parental leave survey sent out by Bliss in February 2019 that found 77% of parents of premature or sick babies felt their leave wasn’t long enough.
The Smallest Things has been campaigning for extended parental leave for families of premature babies since 2014. Our #NotMatLeave petition has now been signed by over 333,000 people and we were instrumental in the governments 2017 Mothers Day pledge to introduce new ACAS Guidelines for employers supporting staff whose babies are born premature. In February 2018 we launched our Employer with Heart charter, asking business to extend leave for families following preterm birth. Organisations from across the UK, employing tens of thousands of staff, have become Employers with Heart, but only legislation will ensure that all families have the support and time they need following the trauma of neonatal intensive care.
My daughter Grace was born at just 28 weeks gestation due to servere preeclampsia. I was in total shock.
I had a quick passing glance at her as she was rushed away for treatment. My family arrived and my partner took them to the neonatal unit while I received cards of congratulations. I remember thinking, ‘no this isn’t right. She’s not meant to be here yet’.
Later, when I was stable enough, I was wheeled in my bed to see her. I was on my own, all of my family and my partner had left by that time. I recall the first time I saw her. So tiny, fragile and precious. It terrified me.
That night in my room I cried and cried. I had no sleep, just looked at the ceiling and I felt so alone. I was in a separate room but I could still hear babies crying and mothers getting up through the night to tend to their newborns. I still remember the helplessness, jealousy, guilt and loneliness to this day. My whole body ached for my baby but she couldn’t be with me.
I was taught how to express my milk for my baby and clutched onto the tiny amounts in test tubes as I took them to visit her. The walk from my room to hers was agony. I was so weak but I made myself go mutiple times with my ‘liquid gold’. I was shown how to express with the machine next to her incubater and I soon had my expressing equipment to take home and spent every morning getting up and ready and getting back to see her.
I pumped every 3 hours around the clock. That was my new purpose in life. I knew that being there and expressing was the only thing I could do for her at that time.
She spend 78 days in the neonatal unit. I sat by her bedspace alone everyday. The nurses taught me how to do her cares and change her nappy through all of the wires. I first held her at 4 weeks old. It didn’t happen very often, only if she was stable enough and they had the time to get her in and out of the incubater for me. And besides, she was so tiny I didnt really want to hold her much incase she got hurt or damaged her delicate skin.
My family came and visited when they could and my partner would come every night from work to be with us. She worked her way though the rooms, getting closer to home the stronger she got. I roomed in with her for the last few weeks as we worked on our breastfeeding and weight gain. Finally we were together the whole time, but now feeling isolated from the world I was still glad we we’re doing so well and we finally got to bring her home on oxygen after 3 months in hospital.
The first few weeks at home were full of hospital at home appointments and hospital checks.
She had her own calender for all of the appointments there were so many. Having her home on oxygen was stressful. Learning how to check, change and travel with the tanks was easy, it was not knowing her oxygen saturation and making sure her tubes were on enough to keep her safe through the night I found hard to deal with. I wouldn’t leave her at all while she was on oxygen and I asked for more unpaid leave from work. I had been developing mild anxiety symptoms for a while but when Grace was about 10 months old I found they ruining my life. I got diagnosed with a servere generalised anxiety disorder (GAD) which lead to me having panic attacks. I was really bad for several months with feeling sick to my stomach, feelings of doom and on edge, extreme dizziness, panic, hot flushes and palpitations that came without notice and completely incapacitated me. I was scared to leave the house incase I had an attack. I remember thinking that something was wrong with my health and I was going to die.
The doctor told me that my tests we’re all fine, I was physically well So when they told me it was my mental state causing all of my symtoms I broke down in tears. As much as my daughter means to me I can remember thinking that if I didn’t get any better I did not want to spend a life living like that. I told my partner that if I didn’t get any better then I wouldn’t want to be here anymore.
I am currently still off work sick, attending CBT sessions and taking medication for the anxiety, which has helped massively.
Grace needed ongoing care, spendingtime at Birmingham Children’s Hospital for an operation on her heart. It was emotionally hard anyway, but made worse by the worry anduncertainty of if I would have another attack so far from home.
I needed to be strong for my daughter and she has shown me what real strenght looks like and my inspiration. Every time that I become overwhelmed I think of her and what she has had to overcome. I am starting to enjoy my life again and I treasure every single day with my Grace. I wouldn’t say that I am completely better but I know now how to ‘cope’ and I manage the anxiety a lot better.
Grace came off her oxygen at 14 months old, her operation was a success and she is now 19 months old and is doing just fine.
Thank you for reading my story.
🔸 With huge thanks to Amy for sharing her story through neonatal care and beyond so openly as part of Neonatal Mental Health Awareness Week | 15-22 April 2019
🔸 Please help Amy and us to raise awareness of the mental heath needs of families following neonatal intensive care. It’s easy, just use the twitter and Facebook buttons now to SHARE.
‘Nope. Thanks very much, but I’m alright’. That’s what I said when I was offered a couple more counselling sessions after discharge.
What I was thinking was, ‘Are you kidding?! No way. My 24 weeker is coming home after only 12 weeks in hospital. I’m happy. Everything is perfect. I don’t need this. I don’t need another appointment to go to. I just want to be at home with my baby.’
Having started off with no mental health support at all in the regional NICU for 8 weeks, I was so grateful to meet a wonderful student psychologist during the 4 weeks stay in the next hospital. I didn’t understand how much help she had been in the couple of times we had met. I underestimated the cliff edge I was standing on as we prepared for home.
We had appointments most days of the week. Matthew went from needing to be woken for feeds in hospital to crying all day and night. He had the general restlessness of a baby born extremely prematurely, whose brain is still fighting to develop its nervous system. Matthew endured months of physical suffering each time he fed. After the feeling of guilt that my body had failed to carry him for 9 months my body was now letting dairy and soya proteins into my milk causing an allergic reaction. I felt like I had poisoned him. He had a hole in his heart but I had no monitor to beep every time his heart rate and oxygen saturations dropped. Even though this was no longer happening to a dangerous level, it was so hard to leave the security of knowing the numbers on the monitors behind us in hospital and just relax at home.
Whenever we left the house everyone wanted to comment on how small he was and wanted to know all about him and I told them everything! It was mentally exhausting but I was desperate to talk, even to complete strangers just to sort through our experience in my own mind.
For all those months in hospital and months at home, everyone told me how ‘strong’ I was. I knew I wasn’t.
I was detached from my baby and from my own feelings. I got up and kept going because I had to and because my husband helped me. Without him, my baby and I stayed in my room in the dark. I know now that I was scared to really feel anything. Matthew was still so fragile. He cried all the time and I couldn’t fix it, even though I was supposed to be his mum.
I could pick a fight with my husband even if he had done the dishes, made dinner, hoovered and changed nappies. I was flying in to a rage so intense that I didn’t recognise myself. I would imagine myself dropping my son between his basket and my bed. At the top of the stairs, I would imagine him landing at the bottom. These thoughts made my stomach turn and my body stiffen because the thought that I could harm my baby terrified me. It was a long time before I found out that these thoughts were not uncommon in new mums and were a sign of anxiety.
I found myself in tears on the motorway because an ambulance passed me. Suddenly, I felt like I was back in the ambulance, praying that my contractions would stop and my baby wouldn’t die. I would hold him during the night while he cried and I would cry with him. This was partly my distress at failing to comfort him and partly the guilt I felt because I knew some parents didn’t get to bring their baby home or had many complications.
I felt that I wasn’t good enough to be his mum because I had him early and because he was safer with the nurses in his incubator. I thought it would be better for everyone if I just wasn’t here any more…
It was another few months before I realised that those thoughts were a sign that my mental health was at its lowest point and listened to my husband begging me to see my GP.
When I finally went, I cried harder than I had done in a good while. I had been putting on the brave face for everyone for so long. I was agreeing with them that it was great to have my baby home, he’s a miracle, he’s done so well. That’s what they wanted to hear. They wanted to see me smile after all we had been through, but it was such an effort and it felt like I was following a script each time I put on the act. I felt like a failure.
My GP asked all the right questions. I told her everything and it felt SO GOOD. I asked her ‘What if I take the medication and it doesn’t help me because I haven’t got postnatal depression, I really am just a grumpy ass?!’ It was so hard to accept that I wasn’t ok now that my son was finally home. I was meant to be happy.
Every few weeks I felt like I was going back to square one and each time my medication was increased. Now I can say the lowest days are becoming infrequent. I’m still really anxious. Sometimes when I get a flashback, my hands begin to tremor. When I hold my hand down my arm takes or the shaking. I was told I could have an 8 month wait for counselling on the NHS. That felt like a kick in the chest. I wanted to heal.
Through looking in to it on my own, I made an appointment with a wonderful midwife who went over my notes with me and answered questions. Thankfully my wait for counselling wasn’t 8 months and it’s helping me to understand why the sustained levels of anxiety for all those months have had a lasting impact on me.
On the good days I’m sometimes buzzing to the point that I know if one little thing doesn’t go to plan, I will fall apart. I feel out of control, just like I was when I went in to labour 3 and a half months early, and for the 12 weeks when I would go home and leave my baby for other people to care for him. Some days I’m stuck going over and over those awful few months.
Coming up to his first birthday was tough. I was thinking over his birth daily. I was remembering the emergency buzzer being pressed and hearing ‘Please, please, don’t push until the NICU team get here, they need to help the baby breathe!’ I was dreaming about different points in his hospital stay with him lying on my chest with all his tubes and wires. I thought about parents we met and how they coping with multiple complications a year on, or with the loss of their baby after months in hospital.
I was remembering being told I had to go home despite my baby still being in hospital because I was no longer septic, and not to worry about all my crying- it was ‘JUST’ the day 3 baby blues.
I can’t believe how much has happened in a year. It has been long, terrifying and at times, lonely. His first few months at home are painful to remember because he was so distressed and I felt so distant from him. Coming to accept that I had post natal depression and anxiety made me angry that I lost so many months to enjoy him and bond as a family, all due to my mental health.
Premature babies don’t stop being premature when they reach their due date. Parents of sick and premature babies don’t step on to cloud 9 as soon as their baby is discharged home. There is a a void between hospital and home where we go from being surrounded by nurses, equipment and other parents to just us. It’s scary! When it’s quiet at home with no hospital noise, there is time to think, but no professionals to help rationalise.
I know that my husband was feeling all the worries that I had for Matthew, but he was also worried about me. He remembers the trauma of premature birth and seeing me so unwell. He lifted me out of the shower when he realised I was lying down crying on my first morning home without Matthew. He was holding our baby on a day when he stopped breathing. Dads’ mental health can be too easily overlooked.
Mental health support when sick and premature babies go home needs to be implemented if parents are to be fit to return to work and to enable families to recover and move forward with healthy, happy relationships.
🔸 With huge thanks to Sarah Kiker for sharing her story through neonatal care and beyond so openly as part of Neonatal Mental Health Awareness Week | 15-22 April 2019
🔸 Please help Sarah and us to raise awareness of the mental heath needs of families following neonatal intensive care. It’s easy, just use the twitter and Facebook buttons now to SHARE.
🔸 If you have a story you’d like to share or would like to support the work of The Smallest Things Charity, please get in touch at firstname.lastname@example.org
Today the BBC have announced that they are to extend paid parental leave for staff whose babies are born premature.
The Smallest Things Founder and chair of trustees, Catriona Ogilvy, welcomed the news, saying:
“We are delighted to see the steps that the BBC are taking to support staff following premature birth and welcomed the opportunity to share our Employer with Heart charter with them earlier this year. Visiting a premature baby on a neonatal intensive care unit is a traumatic, distressing time for parents without the added worry of work and pay. It certainly shouldn’t count as parental leave. The BBC’s new policy gives parents precious time to bond with their fragile babies outside of the hospital environment and take care of them at home for longer.”
1 in 8 babies born in the UK require admission to a neonatal unit, with those born premature expected to remain in hospital the longest.
BBC Presenter Rachel Burden had her son Henry at 31 weeks weighing 3lbs:
“I’m over the moon and so grateful to all the mothers of tiny babies at the BBC who helped bring about this change. Inspired by the brilliant campaign of The Smallest Things charity – we told our stories, urged the BBC to review its own parental leave policies and they listened. It will make a huge difference to parents of premature children who face enormous stress and extra challenges in those early weeks and months. Hopefully other organisations will now be encouraged to sign up to the Employer with Heart Charter.”
Additional leave granted by the BBC, in keeping with The Smallest Things Employer with Heart charter, sees full pay extended for mothers of premature babies (born prior to 37 weeks gestation) by the number of days the baby is born before the due date. For partners, leave is extended by 2 weeks on full pay.
The Smallest Things is a premature baby charity, established in 2014, to support the needs of families and babies beyond the neonatal unit. If you would like further information about The Smallest Things Employer with Heart Charter, or would like to ask your organisation to sign up too, please get in touch at email@example.com
It’s hard bringing a premature baby home from hospital. The journey and worries go on. I’m trying to be honest with myself, I am struggling. Last December my son Bertie was born prematurely at just 27 weeks gestation. I’d had a complex pregnancy with bleeding from 13 weeks and placenta problems. I’d had numerous hospital stays and each time came away with different reasons. To this day the reason why is still unknown, but essentially my placenta was riddled with infections and I contracted sepsis.
Bertie was born by emergency C section at Gloucester Royal Hospital at 17.18. Later that evening, he was transferred to Bristol St Michaels, and then back to GRH after 8 days. I’ve said it a million times, and I’ll say it a million more, the doctors and nurses who work at both these hospitals are wonderful, wonderful humans who ultimately saved Bertie’s life. We are forever grateful.
Bertie spent a total of 120 days in hospital. It really was one step forward, two (or what felt like many more) steps back. This is something we were told right from the beginning and it really is true. He had countless procedures, blood tests, x rays, ultra sounds and blood transfusions. He contracted the dreaded cold in hospital, twice. Intubated, CPAP, high flow and low flow; all terms I knew nothing about before, but will now forever be etched in my mind. NICU nurses become your most trusted friends and make such an impact on your day, time spent on the unit and, this sounds corny, but the rest of your life! I will never forget them. Other mums are like angels. Speaking to mums who “get it” is the most comforting thing. All NICU journeys are different but there seems to be an unspoken understanding of what goes on behind those closed doors. I have made friends for life and I am eternally grateful for their support. I hope I helped them, the way they help me.
We bought Bertie home on 8 April 2018. At last we could be together as a family of 4. Mike, Charlie, Bertie and me. I thought the stay in hospital was the hardest thing I’d ever done, juggling a toddler at home and a baby in hospital was heart breaking and watching your baby constantly fight is indescribable. Mike and I were like ships in the night. I’d be at the hospital during the day, he would go to work, then he’d go the hospital in the evening and I’d be home with Charlie. We’d be lucky to eat a microwave meal together! The uncertainty of Bertie’s health and development was always on my mind, but bringing home a premature baby who has chronic lung disease and required 24/7 oxygen, who is so susceptible to illnesses and who is “failing to thrive” was and is, much harder.
I cannot comprehend why being at home as a family would be harder than our time in hospital, but it is. I feel a huge amount of guilt for saying that, along with a lot of other things. Like not spending enough time with Charlie, not spending enough time with Bertie, not being a “good” wife, the list goes on. One of my biggest guilt is why couldn’t I carry Bertie to full term. I do know that it is not my fault and that I did nothing “wrong”, but I still feel guilt. I was told by a wonderful woman recently that we must accept our feelings and it is just how we feel. I am working on that.
We’ve been home for 7 months now. In that time we’ve had 2 overnight stays in hospital, endless appointments with physios, occupational therapists, dieticians and Bertie’s fantastic consultant. Home visits from our amazing respiratory nurse, which always felt like a visit from a friend, but also difficult visits from health visitors who had little understanding of pre term babies. I feel immense pressure for Bertie to be “well”. I worry. I am swamped by worry. Worry that he is not developing as he is should be, worry that he will have long term effects of being premature, worry that I’m not giving him enough attention, worrying about his weight, worry that he might get ill again, worrying about more hospital admissions and worry that in all this I’m neglecting his older brother Charlie. Going into the winter is an exceptionally worrying time, a simple cold could put Bertie in hospital. It’s already happened twice and it’s not even been the cough and cold season yet.
In August, amazingly Bertie was able to wean off his oxygen in the day. Then in October he has come off oxygen at night too. This was a massive milestone for Bertie! I was so pleased but with this came more anxiety. The oxygen is almost a safety net, a comfort maybe. Take it away, it’s another worry. A huge ongoing battle for Bertie is his weight and feeding, he takes very little milk and has very little food. He has awful reflux which is not helped by a persistent cough. Recently we had a particularly bad spell and he lost weight. I feel like we go round in circles and it is never ending.
There is a massive lack of understanding and knowledge about premature birth, our babies and life after NICU. By sharing our story I want to help people going through the same and give knowledge to others. One of my biggest frustrations is that I feel a lot of people assume that just because we are home now that Bertie is “fine” and like a “normal” baby. I hope this at least goes a little way in showing this is not the case.
Along with guilt and worry, I am filled with jealousy. When I walk through the supermarket and see a heavily pregnant woman, I feel jealous that they’ve carried their baby further than I did, jealous that they will have a new born baby to enjoy and jealous that they don’t know about the NICU experience. I then I feel bad for having those thoughts and feelings. Another seemingly never ending circle that I hope with time will end.
I am grateful beyond belief to the wonderful NHS. It is still early days for me. I have two beautiful sons, I am so lucky, but also feel like I have lost who I am. In sharing our story hope to find myself again.
with thanks to Sophie for sharing her story, raising awareness of the ongoing needs of families following premature birth and neonatal intensive care.
In hindsight, I should have known, but nothing prepared me for how my world would be tipped upside down after giving birth to my twins at 28 weeks in 2007 – still nothing has!
days before the unexpected premature birth
I wasn’t prepared for the abrupt end to my pregnancy and the finality of the birth. The following days were not how I had imagined they would be when I was a naïve, unsuspecting first-time mum, blissfully preparing the nursery. I remember reading a pregnancy book and how I skipped the pages on Special Care because things like that don’t happen to young, healthy mums like me. How wrong could I have been!
No one spoke to me about the possibility of special care, even though I was carrying twins. No one spoke to me about being a high-risk pregnancy, even though I had swollen up just a week before and had a scan that showed I was carrying twin two very low. No one mentioned to me that I should start antenatal classes earlier as I was carrying twins and may have a shorter pregnancy. No one told me an awful lot.
As a result, when I did go into labour in the middle of a Monday night at 28 weeks, I was mentally unprepared. After a long labour, twin one arrived by natural delivery and was whisked away by a team of medics, leaving me with a consultant talking to his team about how twin two was in distress – no one spoke to me.
Next thing, I was whisked into theatre for an emergency C -section and woke to a photo at my bed side of a tiny doll that turned out to be my Isobel; and to a partner who was as shell-shocked as me but with no babies to hold in my arms.
Of course, I would go on to develop severe post-natal PTSD, anxiety and depression as we battled with our daughters, Imogen and Isobel, through ICU, CPAPs, brain bleeds, oxygen deprivation and so much more that I can’t even remember as my brain has blocked it out. No one asked me if I needed help, as I sat with my head in my arms sobbing at the side of their incubators. The consultant didn’t know how tiny he made me feel when he turned to me and said ‘ I think you realise what you’ve done now and how serious this is’; still to this day I don’t know what that meant, but it cut through me. Still no one mentioned emotional support for me.
10 weeks later, my girls came home, I was overjoyed! However, I had no support group, no Facebook group, no accommodation to live in with my daughters during their 10 week stay in SCBU, all that had made me desperately unhappy, isolated, depressed and extremely confused by how I felt.
9 months later, after home oxygen, nurse visits, physio appointments and feeling trapped in a world that I hadn’t planned, I finally spoke up. I went to see my GP to tell them that I was struggling and was referred for talking therapy. 3 months later, I was still waiting. So, I contacted PALS to express my thanks for the care that my daughters had received, but to condemn their lack of support for me. That got the ball rolling and 10 months after the trauma or premature birth, finally, my long journey on the road to managing my mental health demons got underway.
Now, 11 years later, my twins are well. They are healthy, they are happy, active, smart and wonderful. But as I write this today, I still cry. I still struggle to be happy for my friends as they have normal births and normal maternity leave. I still struggle with anxiety, to the point where it has affected my social life and career. I still mourn for the loss of the ‘normal’ experience and have never had any more children out of fear that it will happen all over again. I still can’t forget, and I still feel angry about how little emotional support there was for me. However, I am also strong, and my experience has also helped to make sure that families of premature babies now get timely help when their children are born too early or very ill. I tell my story, not to make you feel down or for sympathy; I tell it because I am proud that I used my experience to fight for change. Now, I know that support is getting better. I know that there are support groups, fast-track counselling, charities that are offering counselling sessions and I also know that my experience will now become a rarity. I can never change what happened and the impact that it all had upon my mental health, but I can change the future and I can use my voice to encourage others who are struggling with mental health problems following premature birth to demand the help that they deserve.
Isobel and Imogen are now 11 years old
With thanks to Louisa Owen for sharing her story and highlighting the mental health needs and emotional impact of premature birth.
To find out more about the mental health needs of parents following neonatal intensive care and how to support families, please see our ‘After Neonatal Intensive Care’ Report.
Maternity leave, what does it mean to you? My first experience of maternity leave started 3 months early, when I suddenly went into labour at just 26 weeks gestation. I was terrified I was going to lose my baby, her heart rate was only 80 beats per minute and my placenta had abrupted.
I went under for an emergency c section, although I ended up having forcep delivery, and we did not see our little girl for over 5 hours. She was whisked away, taken straight to the neonatal intensive care unit, where she could receive the emergency medical care she needed. Whilst we waited we put on a brave face for each other, trying to prepare ourselves and our family members for the worst. I contacted work to let them know what had happened, I know not exactly a priority at this point, but I needed to feel like I was doing something useful. Hearing the shock in peoples voices and relaying what had happened to everyone was difficult, but the support we got was amazing and will never be forgotten….
But, this was not how I expected my maternity leave to begin and I certainly didn’t expect to have a baby weighing just 1lb 11oz (770g).
When we first got to meet our little girl, I’d tried to prepare myself for that very moment. There she was, attached to a ventilator, tubes and wires everywhere, and countless syringe drivers set up for her, monitors alarming. All I wanted to do was pick her up and know that everything would be okay. The first 72 hours are critical. One of the first things a nurse said to me, who happened to be a colleague from when I had worked on the unit a few years ago, was “remember, it’s one step forward and two steps back, it will be a long journey.” This stuck with us all the way through and we will never forget that.
The staff were amazing. Having worked on the unit when I first qualified I knew only too well the risks. There were a lot of staff who were ex-colleagues, however they treated me as Mum and were very supportive to us all. Reminding me that I was her Mum, not her nurse, also explaining all medical information in a way, that as parents, we could both understand it. On maternity leave you do not expect to hear about ventilation, blood transfusions, phototherapy, x-rays, and so on.
Unable to do what families would get to do when their child is term and healthy: Not having that first family photo; not being able to change your baby’s nappy or wash them until you are told its ok to; unable to feed her; only being able to touch your baby through an incubator and for a very short period of time in case they can not tolerate being handled.
The first time I held my baby was when they changed the incubator at 1 week old. She stayed on a little nest that she had been on in the incubator, and we were so lucky to get that chance. We couldn’t cuddle properly for 12 days and even then it was when we were told that our baby was stable enough to come out of the incubator. We jumped at that chance knowing we may have to quickly hand our little girl back if she couldn’t tolerate being held anymore or the position wasn’t quite right and all the monitors were alarming… that was the start of my maternity leave. Doesn’t seem right, does it?
The majority of our family members hadn’t even touched or cuddled our little lady till we got home due to the risk of infection. We couldn’t be luckier with the support from our families, they respected decisions made and were there for us throughout the entire journey.
There are other families who had to wait far longer to do these things, everyday activities we would usually take for granted. But a preemie parent treasures every little moment they get with their baby, you just don’t know what’s going to happen the next second, minute or hour of that day. When you walk out of that door to go home for the night you wait for a phone call; a phone call that could tell you that your baby has taken a step back. Even if there is no phone call from the unit, which is a good thing, you phone through the night to get updates as it’s all you can do to feel close. Is this really maternity leave?
When I phoned through the night I was often asked what I was doing awake at that time? Well, I’m expressing of course!. I may not have been able to feed my baby directly by bottle or breastfeed, but I could express and freeze it for when she was ready. By doing this she had expressed breast milk hourly, just 0.4ml to start on day 3 through an oral gastric tube. I was finally doing something for her that no-one else could.
As our little girl kept moving forwards and defying the odds she got stronger and stronger everyday, she got us through this as she has so much strength. I sat by her incubator everyday and watched her and when we were able to we took over her everyday cares and were encouraged to take her out of the incubator when we wanted to with the nurses there to support us. It took about 8 weeks, but we were finally looking after our little girl. When we got to 9 weeks she had her first bath. At 10 weeks we were told we could start rooming in! We were so scared, this meant we would soon be taking our little superstar home, and that frightened us as she was still on monitors.
When we left the unit she had no monitors, no beeping. We had spent the entire stay learning to look at our baby, listening to the beeping and to know if something wasn’t quite right with her breathing. It’s hard to detach from this. My maternity leave so far had been a mixture of emotions, but we were on our way home, finally.
I heard that Medway NHS trust were signing up to The Smallest Things ‘Employers with Heart’ charter once we were home and I called my manager at once to see if it would apply to me since I was already on leave. They quickly confirmed it would and that I would receive the full 13 weeks and 3 days that our little girl was early as additional leave at full pay. We were hugely grateful. My manager and colleagues have been extremely supportive in so many ways, getting regular updates, plus visiting us and this was another example of the Trusts understanding and support.
What it means to us:
Of course, she is worth every extra penny spent, and more, but when you have to travel back and forth to the hospital every day, pay for petrol and parking, as well as food and drink on the go, the costs quickly add up and the extra income this provides is crucial.
Premature babies have a lower immunity so the risks of getting colds and having hospital admissions are high. The additional time helps ensure I can attend the consultant appointments, eyes and hearing checks and so on.
Our time in hospital was 11 weeks and 3 days, nothing can take away that time. However, the additional leave gives time back, previously I may have only got 6 months with her at home, now I have 9. This means I will have more chance of seeing her reach developmental milestones. If I had had to return to work when she’s 9 months, although just 6 months corrected I could miss out on her first roll, the first time she sits up on her own or crawls. I now hope to get to share these moments and maybe even see her stand for the first time.
Knowing we have got the time back that was spent in hospital is incredible, we will treasure every extra moment that we have as it has given us more time to spend with our little girl.
If you’d like to ask your employer to support staff whose babies are born premature, find out more about our ‘Employer with Heart’ charter here, or contact the Smallest Things directly at firstname.lastname@example.org
The Smallest Things are delighted to be working together with the Government Department for Business, Energy and Industrial Strategy (BEIS) to feed into their review of parental leave policy for families following premature birth.
Drawing together the views of parents, we are keen that the minister hears first hand experiences from mums and dads, just like you. Can you attend a 2 hour focus group to share your story?
The group is open for parents who have had a baby born premature (prior to 37 weeks gestation) within the last 18 months and will be held in London in late November. We are looking to facilitate a group(s) outside of London at a later stage.
If you are interested in taking part and would like to help shape future Government policy for parents of premature babies please contact Catriona directly at email@example.com with the subject ‘Focus Group’.
Medway NHS Foundation Trust was the first hospital in England to recognise the needs of staff whose babies are born premature. Signing up to The Smallest Things ‘Employer with Heart’ charter, the trust now offers extended paid parental leave for staff whose babies are born premature and the news has prompted other hospitals to make similar changes.
As Founder of The Smallest Things I welcomed the news; visiting a fragile baby on a neonatal intensive care unit for weeks, sometimes months, is terrifying and shouldn’t be counted as maternity or paternity leave.
But I also know first hand the difference it would have made to my family if my own NHS employer had granted extended leave following the premature birth of my son seven years ago.
It was a Friday morning when my waters broke with little warning. I was just 30 weeks pregnant, months away for my due date. I was getting ready to leave for work, but in a moment everything had changed. I’d not started antenatal classes, a birth plan was still weeks away and a date for starting maternity hadn’t even been set. I quickly sent my boss a text message to say I was off to the hospital and would speak soon. I hadn’t quite appreciated that “speak soon” would mean informing my HR department of the sudden and early arrival of my baby and that my maternity leave would begin the very next day.
Nothing was ready. I wasn’t ready. Within a few hours my first son had been born and taken away to the neonatal intensive care unit. “He’s doing well” a nurse told me, but I couldn’t help notice the mechanical way his tiny chest rose and fell as his life support machine pushed oxygen into his lungs. He was covered in lines and attached to machines and monitors. I waited 6 long days to be able to hold him for the first time, but even then the wires and tubes obscured his face and although I was desperate to hold him close I was terrified of hurting him as the monitors began to beep and alarm.
Those sounds stayed with me long after we left neonatal intensive care and in that I am not alone. The Smallest Things ‘After Neonatal Care’ 2017 Report highlighted the extent of mental health difficulties faced by parents of premature babies with a staggering 44% experiencing flashbacks to their time in neonatal intensive care; and yet this time, visiting a baby in neonatal intensive care is classed as maternity leave.
By granting extended paid parental leave employers are giving staff the time they need to recover from the trauma of neonatal intensive care. They are giving premature babies the time they need to grow and develop, reducing the risk of future hospital admissions and giving precious time for mother and baby, finally home, to bond. The benefits to staff and employer are clear and I am looking forward to seeing more and more NHS Trusts and employers signing up to The Smallest Things ‘Employer with Heart’ charter.
For more information about The Smallest Things ‘Employer with Heart’ Charter – see here or contact The Smallest Things directly at firstname.lastname@example.org
Over 236, 000 people have signed the change.org petition calling upon the UK Government to extend leave for all families affected by premature birth – have you?
The Smallest Things are delighted that London Mayor, Sadiq Khan, is pledging his support for staff whose babies are born premature or require neonatal intensive care.
Welcoming the news, Catriona Ogilvy, The Smallest Things Founder and Chair said,
“We are pleased that the Mayor has taken this ground-breaking step of recognising and supporting families of premature babies and that City Hall has been awarded our ‘Employer with Heart’ accreditation.
“Visiting a premature baby on a neonatal intensive care unit is a traumatic, distressing time for parents without the added worry of work and pay. It certainly shouldn’t count as parental leave. The Mayor’s new policy gives parents precious time to bond with their fragile babies outside of the hospital environment and take care of them at home for longer. We are delighted that Sadiq is joining The Smallest Things in encouraging all employers to provide extended leave to parents of premature babies.”
The ‘Employer with Heart’ charter, launched by The Smallest Things Charity in February 2018, asks employers to extend paid leave for a mother by the number of days her baby was born premature, and to offer an additional 2 weeks paid leave for their partner. Current UK legislation sees a mothers statutory maternity leave begin the day after a baby is born premature, often weeks and months before a baby is able to leave hospital.
Announcing the news the Mayor of London, Sadiq Khan, said:
“Becoming a parent should be an exciting time, but unfortunately for some parents it can also be a difficult and emotional experience. It is only right that employers give new parents the time and support they need to adjust to this momentous change in their lives and to support their return to work.
“I am pleased to set out our plans for how this can be done at City Hall, and I encourage other employers to learn from the approach we are taking and think about how best they can support new parents. London is a city of opportunity for all. We should do everything can to give hardworking and talented parents the support they need to thrive in the workplace, and the support children need to get the best start in life.”
London City Hall follows in the footsteps of local authorities such as Walham Forest, Croydon, Cheshire West and Chester, Southwark, South Ayrshire and Haringey Councils, as well as NHS Trusts including Medway Foundation Trust and Sandwell and West Birmingham Hospitals. In the summer Paloma Faith, welcoming the news that music giant Sony UK were adopting The Smallest Things recommendations, called for all UK employers to support parents following premature birth.
Find out how you can sign up to The Smallest Things ‘Employer with Heart’ charter here.
For more information, contact email@example.com
This week The Smallest Things has welcomed the news that a second NHS Trust has pledged to sign our Employer with Heart charter, extending paid leave for staff whose babies are born premature.
Leading the way in the West Midlands, Sandwell and West Birmingham Hospitals chief nurse, Paula Gardner, said “We are pleased to become the first Trust in the West Midlands to offer this commitment to parents. Our staff are dedicated to their jobs and work hard to ensure their patients receive high quality care, so we believe that we should return that sentiment by looking after them when they need our help in their personal lives. By signing up to this charter, it means that we will be able to help new mums and dads who are facing a difficult and worrying time after experiencing premature labour.”
One in eight babies are born prematurely and for mothers their maternity leave begins the very next day, weeks and often months before brining their baby home from hospital. The Smallest Things are working with other NHS Trusts and hope that more hospitals will continue to follow the lead of Medway NHS Foundation Trust and Sandwell and West Birmingham Hospitals.
Welcoming the news Catriona Ogilvy, founder and chair of The Smallest Things charity, said “We are delighted that Sandwell and West Birmingham NHS Trust has recognised the unique needs of families of premature babies and is signing up to our Employer with Heart charter.”
“Giving birth prematurely and spending time on a neonatal unit for weeks, sometimes months, is terrifying and traumatic for parents. The last thing they should be worrying about is work and whether they can afford to spend time at the incubator or cot of their fragile baby. We know that the journey often doesn’t end when a premature baby is allowed to go home either. This extra time will go some way to supporting parents’ mental health, the baby’s medical needs and ultimately aid a smoother transition back to work when the time comes.”
More information about The Smallest Things Employer with Heart charter and how to implement this at your place of work can be found here.
While you’re here – more than 229,000 people have signed our petition calling upon the Government to extend paid parental leave for all families whose babies are born premature. Will you sign and add your name? SIGN NOW!
Lena made a change to support parents of premature babies in just 7 days after her friend experienced premature birth. She said “having to return to work only 18 weeks after giving birth, when her baby had only been home with them for two months. That’s what my friend had to do. And I don’t think that’s ok for anyone to have to do at any company.”
Signing up to The Smallest Things Employer with Heart charter GrantTree have pledged to extend paid parental leave for staff whose babies are born prior to 37 weeks gestation.
Welcoming the news Founder and Chair of The Smallest Things Charity Catriona Ogilvy said “Lena was able to change her companies policy in just 7 days and in doing so she has made an enormous difference to lives of staff affected by premature birth. We are delighted that GrantTree have recognised the significant impact premature birth has upon parents and the additional time will support their staff through and after the trauma of neonatal intensive care.”
Lena told The Smallest Things “As a company we don’t want to sacrifice our happiness for commercial success and supporting premature parents at a time of need seemed a necessary and compassionate step to take. Implementing the policy change took only seven days and has been welcomed by everyone. Seeing the company embrace the policy has made me immensely proud to work at GrantTree.”
! While you’re here, more than 229,00 people have signed our change.org petition calling upon government to extend parental leave for families affected by premature birth. Will you sign and add your name?
My journey through premature birth and neonatal care began back in January 2016.
I was just 24 weeks pregnant when my waters ruptured.
Calling ahead to the maternity day care unit they told me to go straight in. They confirmed that my waters had ruptured and I was taken to the labour ward, unsure if I would progress into labour or not. I spoke to the team from neonatal care and was told that if my baby did come early wasn’t a space for him in the unit, I therefore needed to be transferred to another hospital with spaces for us both. While this was being arranged I started to bleed. It was a relief as it meant I had to stay put, I wasn’t stable enough now to move. The thought of being away from my husband & other son was just too much. But what about my baby? They reassured me that they would do everything they could to find my baby a space.
We met the NICU team and visited the NICU unit. I remember it being so calm, both quiet and noisy at the same time. The beeps – I’ll never forget the beeps.
We were told about the slim chances of our baby surviving at 24 weeks. We were asked if we wanted to ‘let nature take its course’ or if we wanted them to do all they can. That is one question I never want to hear again. There is some naivety about being in hospital. I don’t think it really crosses your mind, that ‘what if?’
I stayed I hospital for about 5 days on bed rest. My baby didn’t arrive so I was allowed home.
For the next 2 weeks I made the trip to maternity unit to get checked over every other day. I had a couple more admissions as well with small bleeds.
On Valentine’s Day 2016 I had a huge bleed. We called my midwife who told us to phone an ambulance. We arrived at the hospital at about 6pm. I was examined, monitored and scanned. They were confident that I wasn’t in labour.
It was around 8pm, shift changeover, that I was put back on the monitor. I was uncomfortable and in a bit more pain. We didn’t see our new midwife much as they were quite busy, and after all I wasn’t in labour… when all of a sudden I felt this immense pressure in my bottom along with a really strong contraction. My husband suggested that we call the midwife, but I said I was fine. Then a couple of minutes later it happened again. My husband shouted for help and the midwife came running. She had a look and could see the baby. The room filled with medical staff, it was hectic, urgent. They whisked my baby off to a room across the corridor, the room emptied.
The waiting was awful. A couple of doctors came and went asking various questions, taking blood samples. One even asked if baby had a name – Jacob.
We were told we would be able to go at around 3am to see him. By this time we were in a private room on the maternity ward. I’d showered, got dressed, phoned my parents and called my sister to check on my other son. Done as much as possible to busy my mind. 3am came. The staff on maternity called NICU to make sure they were ready for us to go round.
The walk to NICU was one of the longest walks of my life. It was the dead of night. There were no other people around. We were buzzed in and I remember we just waited at the reception desk unsure of what to do or where to go. We eventually made our way round to the sink to wash our hands and then made our way to the Intensive Care Room. There was a lot of hustle around our baby. But he was stable. He had been ventilated, he was on a drip, countless medications.
The one thing I hadn’t been prepared for when I saw his incubator was the condensation. You literally couldn’t see the baby there was so much. We opened the doors to take a closer a look. He was tiny. 2lb 3oz. His skin was red and transparent. He was bruised from his traumatic birth. I broke down. My body had done this to my little baby.
What followed was a long 11 and a half weeks in hospital. He suffered a collapsed lung, numerous suspected infections, not gaining enough weight, reflux, retinopathy of prematurity (ROP), oxygen dependency…but we got there.
First cuddle at 2 weeks old
It was so hard to start with, but once we got into a routine it became more manageable. My husband and I did separate ‘shifts’ at the hospital so we could both spend time with each of our sons. My husband still had to work, my maternity leave pay wouldn’t even cover the mortgage!
Jacob came home 10 days before his due date on oxygen. We were given the choice of staying another couple of weeks to try and wean him off the oxygen, or taking him home. We chose home. I don’t think we could have spent any more time on the unit. We needed to be a family.
Home at last
Jacob is now 2 and a half and doing well. He managed to wean off of the oxygen in December 2017. He is a feisty little bean, full of life. Unless you know him and his rough start, you’d have no idea about what pain his little body has endured.
Saying goodbye to the oxygen at 26 months
And me? Fast forward a little while to November 2017 and I had another premature baby. This time I managed to hold on to him a bit longer – 33 weeks exactly.
I’d had a pretty rubbish pregnancy with lots of bleeds. I’d re-met the NICU team at 24 weeks as I’d been admitted with bleeding. I was terrified the same would happen again.
We were told the likelihood of my waters rupturing early again were slim, so once we’d passed 28 weeks, where we’d got to last time, we were optimistic. Maybe it was just a one off last time?
Or maybe not.
I woke to my waters leaking. It was the middle of the night, my other 2 sons were fast asleep. I woke my husband, called my mum to come and sit with the children and made our way to hospital, I hadn’t even packed a bag! We were quite relaxed about it all, after all we’d done it all before.
We arrived on the labour ward a couple of hours later. I was examined and put on a monitor. We just thought that I’d be home in a couple of days as I wasn’t in labour, again.
How wrong we were.
The baby’s heart rate dropped and took a long time to recover. The room filled and I was being prepped for theatre. I’d had a placental abruption. It was happening again.
In recovery I was shown a couple of pictures of baby. He came out screaming. He was in NICU, but was breathing on his own. He weighed 3lb 12oz.
It was about 6 hours before I was wheeled round to see him. On the way all the staff in NICU congratulated me, told me how beautiful he was and how well he was doing. It almost felt like I’d come home. From our last baby we knew most of the staff. We knew the unit, everything was familiar.
They got my baby straight out of his incubator for me to cuddle. I couldn’t believe I’d got my first cuddles already. He really was ok!! We called him Oliver.
Holding Oliver for the first time
Due to his gestation he didn’t need the scans and tests that our last baby had had. At 33 weeks he just needed time to grow and put on some fat. But during our time in NICU Oliver had trouble maintaining his temperature so he spent longer in an incubator.
Baby Oliver spent longer in his incubator
Obviously home was on our mind. I never asked when they thought he might get to come home – I already knew the answer – aim for his due date. But his due date wasn’t until January. How was I supposed to give Christmas to my other boys and have a baby in hospital? As far as I could see there was no medical issues. We needed to establish feeding and get him to gain some weight. The nurses were fantastic and knew we wanted to be home for Christmas. They pushed Oliver with his breastfeeding and arranged for me to room in sooner rather than later and we made it home, all together for Christmas.
Oliver is 9 months old
Oliver is now 9 months old and doing well with no obvious complications from prematurity.
Jacob and Oliver
Both of my babies journeys in neonatal intensive care were so different. For me the second time around was the hardest. Having that knowledge of what goes on, what to look for, what to do, what can happen – it didn’t help, for me it was worse.
The work that the doctors and nurses do is absolutely incredible. There aren’t enough words to show your thanks and appreciation for all they do, not only for the babies in their care, but also for the families of those babies. I will never forgot our journey through neonatal care.
Written by Hayley Petts
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Medway NHS Foundation Trust has become the first in England to sign up to The Smallest Things ‘Employer with Heart’ Charter, pledging its commitment to support the needs of premature babies and their families.
Current NHS terms and conditions afford new mums whose baby has been born prematurely to split their maternity leave, allowing them to take two weeks leave immediately after childbirth, and the rest following their baby’s discharge from hospital.
One in eight babies are born prematurely and subsequently parents have a reduced time to bond with their baby with the period from birth, to discharge for babies born prematurely typically being several weeks, or even months. The Trust has therefore taken the step to support new mums in this intervening period by committing to ensure they receive their normal pay up until the point that their normal maternity pay commences.
James Devine, Deputy Chief Executive and Executive Director of Human Resources and Organisational Development said: “We are proud to have become the first NHS Trust in the country to sign up to the Employer with Heart Charter.
“Our staff work tirelessly every day to look after our patients and we want to ensure that they also receive the support that they need when they have difficulty in their own personal lives. We know that this will affect only a small number of our staff each year, but it is so important that we care for those who are caring for others.
“We understand that it can be an extremely difficult and worrying time for those who experience premature labour and the last thing we want is for our hardworking staff to feel they have to worry about work or whether they can afford to take time off to be with their baby”
Catriona Ogilvy, founder of The Smallest Things, said: “We are delighted that Medway NHS Foundation Trust has signed up to our Employer with Heart charter and will give parents of babies born prematurely the extra time they need. Visiting a fragile baby on a neonatal unit for weeks, sometimes months, is terrifying and shouldn’t be counted as maternity or paternity leave. This extra time will give parents more chance to bond with their babies, take care of them at home for longer and recover from the trauma themselves.”