Up until May 2016 we had the youngest surviving 23 weeker twins in the U.K. That’s quite a fact isn’t it?
Maybe some would be proud of this and others, like me, fearing the prospect of unwanted media made us feel somewhat, isolated. Regardless, the fact my twins were born so early has to have been one of the most frightening times of mine, my husband and step daughter, Lucy’s life.
I gave birth to Matthew and Thomas on two separate days, 27 hours apart on 1st and 2nd October 2015. They were born at 23+2 and 23+3 week gestation. They weighed a tiny 520g and 560g and were only the size of my hands.
Labour itself was traumatising. Because viability is such a controversial debate with the consensus believing that intervening with sustaining life should be from 24 weeks onwards (well, government and medical professionals anyway!)
The fear my husband and I faced during the 103 hours of active labour petrified us … my consultant wanted to save the boys and had me on magnesium sulphate, diamorphine, entonox…. everything possible to steer contractions away. But then shift changes at hospital and we were faced with several different doctors – some of differing views and some who would give us the harrowing facts that actually, these boys wouldn’t make it.
However – their strong heart rate and no sign of distress told everyone otherwise.
They both arrived breathing, Matthew first – crying! He arrived making a sound!… Thomas, was a little more difficult as I had become so gravely unwell.
It had been a matter of life and death for me.
But they arrived and their journey began!
They spent 5 months in SCBU and defied medical history with fighting for their lives with NEC, infections, Pneumothorax, PDA, countless blood transfusions, chronic lung disease with home oxygen and ROP.
Thomas came home first and 4 days after, Matthew did.
These short days at home were the most craved for moments we will cherish for the rest of our lives… no doctors, no beeping of machines, no specific care times, cuddling in for as long as we wanted, dressing them how we wanted. It was amazing, but sadly short lived.
They were 5 months old (1 month corrected).
On the day of Matthew’s home coming, Thomas had spent 4 glorious days at home with me before sadly, he became acutely unwell and struggled with breathing.
He went into respiritory distress and I had to resuscitate him. I’m a nurse and you’d think something like this would come as second nature. But my “mummy” head just felt so frightened, both my husband and I went into “fight or flight” mode and then the next thing we knew, we were in PICU, Thomas intubated with saturations of only 34% and an initial diagnosis of bronchiolitis.
Secretions sent and returned with positive of H1N1 influenza type A (swine flu). He was oscillated for weeks with an unknown prognosis.
During this time Matthew continued to grow at home, without his twin.
We spent long hours each day with visiting Thomas, some days Matthew wasn’t allowed to be with him due to cross infection. It was really such a testing time… back on that rollercoaster we all knew in scbu. I felt I had to tear myself into several different people. I started to become robotic in my approaches in order to make sure BOTH boys had their mummy.
After treatment from swine flu, Thomas eventually came off the oscillator and back onto the conventional ventilator.
We thought there was progress however, each time they tried to extubate him, he would desaturate… as low as 17. He just couldn’t cope without the pressures and support the ventilator would give.
Eventually, we agreed a tracheostomy would be the way forward. Thomas seemed to thrive following this – as of it was the best thing to help him turn a corner.
Dad and I did some intense tracheostomy training, resus training and started to plan discharge.
Matthew was allowed to spend more twin time with Thomas and we eventually roomed in after almost 3 months of utter turmoil.
During our rooming in, Thomas became very quickly, acutely unwell.
Too many secretions with 5 minute interval suctioning. He brewed an infection and became a PICU patient again.
He progressively got worse and pressures were at the highest they could be with 100% oxygen requirements.
He slowly started to desaturate. As a mother to watch the monitors show deterioration as your son smiles at you and sucks his dummy, you just can’t comprehend that he was getting worse.
But he did and the consultant asked to talk with me.
The worst news was given and Thomas was losing his battle. He was almost 8 months old.
We had to withdraw care and make that harrowing decision that no parent wants to face and that was to turn off his life support.
He passed away peacefully in our arms on 11th May 2016 with his twin, Matthew close by.
It’s been just over a year now. It’s been an excruciating, raw and sad time for us a family. Their big sister, lucy who was 11 at the time still attended to her exams because she wanted to do her little brother proud and didn’t want to take too much time off school.
My husband had to return to work because we needed an income – he suffered but “got on with it” as many of you all would agree, dad’s just do. He became my only solid rock – because he was the other person to witness and go through it. He is such a brave and strong man. We call him our hero because he just tried his best to look after us all and protect us from the sadness.
Matthew – continued to grow. He’s 20 months old (16 corrected) and for a baby that was given a poor prognosis due to his grade 3/4 right sided PVL… he’s now crawling, pulling himself up and enjoying nursery.
Me? … I was diagnosed with PTSD. A learning disability/mental health nurse with a mental health problem?!… it’s a stigma and it happens. I’m human and trauma can affect us in so many ways.
I spent months having horrendous flashbacks, triggers, grief disorder, isolation, losing friends because of my grief, completely shutting down.
I couldn’t go to Asda without simple triggers and bumping into people who would ask “how’s the boys?”… whilst dealing with the ongoing additional medical needs of Matthew who needed me, needed me to be his mummy.
I was scared of seeing people, I was scared of groups of people and petrified to interact and socialise. It was always safer to simply, stay at home. Because, this way, Matthew won’t get poorly and end up like his brother.
I agreed to have intense psychological therapy, along with pharmaceutical intervention (medication) I slowly started to open up and I blogged about the boys’ story and my PTSD in order to build awareness. To share with people the positive and negative affects it has to be parents of premature babies. To express immensely about viability. Blogging became a huge part of therapy for me.
What has me “Just Surviving Somehow” is that I still have one of my two miracle of baby’s – he’s here, he’s happy and he’s thriving.
Importantly, I needed to share awareness of PTSD. Over 60% of mothers going through a SCBU journey and loss of a child will experience post traumatic symptoms. Other post-partrum illnesses are on the rise and often, mum’s feel too afraid to speak out or seek help.
I feel able to share openly our journey as a family now. I’m in a bit of a better place to share it.
I’ve recently gained the courage to go back to work. It was such a hard decision considering I never thought I’d ever return to employment, when institutionalised in a hospital environment was almost 8 months, all day every day, feeling helpless and becoming overly obsessed with hygiene, I never thought I could ever return to nursing.
It’s a slow and progressive process but I’m getting there.
We miss Thomas so much. Not a minute goes by where we don’t think of him. Our home is covered with memories of Thomas and I talk about him all of the time.
Both our boys are truly amazing. The resilience in our preemie babies is breath taking. Their fight, their bravery …. they truly are angels of earth!
I’ll always remind Matthew of his brother, of both their fight, of their strong will to survive.
I’m so proud to be Matthew and Thomas’s mummy.