CDH | The Smallest Things

At our baby boys 20 week scan we got the shattering news that our unborn baby had a Congenital Diaphramic hernia (CDH) which came with a devastating 50/50 chance of survival. I remember just seeing my wife Joni’s face; absolutely heartbroken and gutted. We have another son, Lucas, who was 4 at the time with which Joni had a fantastic pregnancy. I managed to convince Joni enjoy the rest of her pregnancy the way she did with our first born, and she did. I honestly believe if she wasn’t as strong as she had been then Davis wouldn’t be here today.
The day Davis was born should have been one of the happiest days of our lives, but instead we had to watch our baby boy be whisked away to the side whilst he was intubated and paralysed. After nearly 45 minutes of tears and agonising uncertainty, the 15 strong team of doctors, nurses and surgeons finally stabilised him enough to move him to the neonatal intensive care unit (NICU).
Once on NICU Davis’ battle had only just begun. He had survived birth, but his condition was critical and he was being assessed minute to minute. I can’t recall how many times we had to watch helplessly as our baby boy nearly died time and time again.

He had only been in our lives for 12 hours when we got the dreaded news he wasn’t going to make it, not unless he went onto a machine called an ECMO – a heart and lung bypass machine – which required surgery to install into his main artery and vein. Whilst on ECMO though the problems kept coming and we watched as he overcame internal bleeding and fluid in his body resulting in chest drains and 2 ECMO circuit changes (more agonising surgery).

The longest you can stay on ECMO is 3 weeks, so after 2 weeks they decided to trial Davis off it. To our anguish he didn’t cope. We were gutted.

I always asked the doctors and nurses about a million questions a day and knew exactly what all the screens, monitors and numbers meant and where he should have been. That was my way of dealing with it. The nurses and doctors were second to none, but their faces that day said a thousand words when Davis trial off ECMO failed. They didn’t think he would make it as his odds of survival had now been slashed considerably.

Davis wasn’t finished though and he started to turn a corner. His stats looked slightly better, not great but maybe enough to have the strength to come off ECMO successfully, and perhaps strong enough to have the lifesaving surgery needed to repair his diaphragm and to move his organs out his chest cavity where they had grown in the womb, and in doing so had pushed his heart to the side and had stopped one of his lungs from growing.

Davis came off ECMO and received his surgery, with which came more fatality risks. It took surgeons 3 attempts to repair his diaphragm and by now 4 weeks had passed and Davis was still in his induced coma. At this point in our journey Davis should have started to recover, but instead of hope and repair he had punctured his good lung. I thought he was a goner this time. I thought how can he possibly take any more? But he did, recovering from his punctured lung he was then wiped out by an infection that would have floored a grown man. Our baby boy was strong.

After everything that has been thrown at him he started to go from strength to strength and after 8 weeks we finally got to hold our boy. I can’t begin to say how we felt. It was so emotional.

After that the medical team began to reduce his meds to bring him out his induced coma. It was a nervous wait as he had never opened his eyes before and the sense of sight may cause stress resulting in another punctured lung. For once he reacted well and we saw our baby boys eyes for the first time in nearly 3 months!

Five and a half long months in the NICU saw us stuck in a bubble where you forget that there is an outside world. We were very fortunate to have had and have met so many wonderful and strong people and babies. The nurses and doctors don’t get enough credit for what they do in there. They make you feel welcome, safe and treat you like a human being. Mel, Martin, Mark, Lisa, Laura, Jason, Paige, Ross, Jacqueline and John are just some of the now close friends that we had the honour of sharing the NICU bubble with. I am so thankful to Billie and Fran (Joni’s parents) who stood by us every single day and gave us so much help and support.