As the busy working mother of a fit and healthy almost 3 year old I don’t often think back to the less than healthy start in life he experienced. Prompted by the imminent arrival of my niece I have recently been thinking a lot about my beautiful boy’s different and difficult start in life. To look at him now you would never know that he had overcome a 50% survival rate to find his place in the world. This month is CDH awareness month, which has compelled me to tell my story.

Like most new parents my husband and I were thrilled to be pregnant after 9 months of trying and I was lucky enough to be feeling great in the early months, full of the joys of bringing a new life into the world. So when the news came at our 20 week “anomaly” scan that our baby had a life threatening condition called Congenital Diaphragmatic Hernia we were devastated. The “Pick of the Week” features a full article on the details of this condition so I won’t go into them here, but in short there was a hole in his diaphragm allowing his stomach organs to float up into his chest and restrict development of his lungs and therefore threatening his tiny little life.

CDH-Story

The next couple of weeks were probably the hardest of my life, while we were referred to our nearest high risk maternity unit for further tests and were forced to consider whether we could even continue with the pregnancy. I have to say that we came very close to deciding that the risks were too high for our unborn child, but in the end my initial maternal instinct that any reasonable chance that he could survive should be taken won through.

So we got on with our lives and I took immense joy from the fact that, while my baby was inside me, he was safe. That was until at around 7 months pregnant my blood pressure started to rise and 6 weeks before my due date I was hospitalised with the suspected symptoms of preeclampsia. As you can imagine, this was less than ideal, and although every effort was made to get my blood pressure under control, our son was born via emergency c-section almost 5 weeks early weighing only 1.5 kgs.

We were well prepared for what would happen when he was born… After a brief glimpse of him he was whisked away to be put on a ventilator and stabilised in the intensive-care neonatal unit where he would spend the next few weeks. To this day I still don’t know what small statistical chance he would have been given from such tiny beginnings, but to say that he had a fight on his hands would be an understatement.

Over the first week he improved and at 8 days old he underwent the surgery to correct the hernia. I cannot even begin to understand the complexity of such a procedure, a 3D jigsaw to put all the stomach organs back through the hole in the diaphragm to where they are supposed to be and close the hole to give space for the lungs to expand and develop further, and all in a tiny baby! The hours that passed while he was in the operating theatre were the longest of my life and when it was over we were warned that although the operation had been a success it had been extremely difficult and the next few days would be crucial to his recovery.

And so it went on; he started to recover well then his lung collapsed; he recovered some more and then there were feeding complications (feeding problems being quite common in babies that have had all their stomach organs in the wrong place); they took him off the ventilator and although he managed a few hours of unsupported breathing his lungs both collapsed and he had to go back on the ventilator, by which time he was almost 4 weeks old! At around the date that he should have been born things really started to turn around and within days he went from being on a ventilator in an incubator in intensive care, to being in a cot in a high dependency room and breathing for himself. After around 6 weeks he was transferred to a local hospital and after 9 weeks in hospital we took him home on my 34th birthday, and he has gone from strength to strength ever since.

I have thought a lot recently about the various small events that are milestones in the early days of every baby’s life, but how these are in some way crystallised when they cannot be taken for granted. As I said earlier, I am about to become an auntie and I wasn’t sure how I would feel about seeing someone so close going through a “normal” pregnancy, but as almost all mothers can testify there is no such thing as “normal”… Our journey may have been hard but I rarely think of it as such and feel extremely blessed to have a happy, healthy child who is my inspiration, when things could have been so different and are for many less fortunate families.

I may not have held my son 3 seconds after he was born, instead waiting for not 3 minutes, hours, days but weeks to hold him in my arms, but how precious that moment was when it came. The same can be said for so many moments in his life: when he opened his eyes for the first time after a week and it was like seeing him for the first time again; changing his tiny nappy in the incubator becoming a joy rather than a chore, as we were able to look after him in the smallest ways; holding his tiny hand for hours on end as he healed ;and not to mention finally taking him home, which felt like he was born all over again, finally ours to take care of entirely.

I have written this firstly to raise awareness for a condition that is little understood or heard of, so spare a thought for those parents and little ones that are not so lucky, but if you take one thing from reading this let it be that you treasure those precious moments as much as I do…

By Lara Peters (baby Jake pictured). 

CDH Awareness month is June and awareness day is 28th June. For further information please visit the CDH website, like our facebook page or follow us on twitter @CDHUK_CHARITY.

Jake CDH

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2 Responses

  1. Anonymous

    Hi Lara; I’ve been moved by your story above. I knew a bit about Jakes journey but not all. I never knew about CDH until I met you and Facebook is great for spreading jnfo and awareness. Hope you’re all well. Jake is such a lovely little boy; you must be so proud. Might see you out and about. Lisa (summer’s mum) x

  2. Lara Peters

    Thanks to anyone that takes the time to read or share our story xxx all the best Lara Peters & family