CDH is an abbreviation for congenital diaphragmatic hernia and occurs in approximately 1-2500 births. CDH accounts for around 8% of all major congenital (born with) abnormalities. There is no firm evidence, but it is suggested in some studies that it is more common in boys, and there is no known single cause or factor.
In a pregnancy, the diaphragm forms at 7-10 weeks gestation. A congenital diaphragmatic hernia occurs when the diaphragmatic fails to form correctly or fails to develop. This causes the contents of the abdomen to herniate into the chest, which limits the space available for the lungs to develop properly.
Rarely, a CDH is part of a chromosomal abnormality such as T18 (Edwards syndrome), T13 (Patau syndrome), T21 (Down syndrome) and Turner syndrome. The most prevalent chromosomal abnormality associated with CDH is trisomy 18 (Edwards syndrome) and occurs in less than 2-5% of cases.
It's important to remember that each case is unique. Without an additional abnormality, the prognosis for CDH is currently 50%. Other features of CDH can include lung hypoplasia, pulmonary hypertension and heart defects. It is difficult to diagnose additional problems until after the baby is born.
Unfortunately, in our case, Jacob had a congenital diaphragmatic hernia and Edwards syndrome. It is very easy for me to list off statistics and talk about the medical jargon related to the diagnosis, and I have gotten to the point in my journey where it is almost rehearsed and ready to spring into conversation. Talking about the feelings behind the diagnosis is a separate matter and a lot less easy to prepare for conversation.
Recieving the diagnosis of CDH is terrifying, and it's something that you never think will happen to you. I had never heard of CDH before that day, so was completely unaware of what it was or what it meant for our baby. I will never forgot the sonographers face. The way it dropped when she scanned me, and how her voice changed. That moment is embedded in my mind forever. I would recognise her face now and it's been ten years. I will also never forget being taken into a little side room whilst other parents were happily skipping off with scan photos and excitedly talking about their plans. I don't remember a single word that was said to us in that room, but I remember everyone's faces. I remember that Jacob was kicking inside me the whole time, unaware of what was happening to him. I had just had cold jelly on my stomach, and he had just been prodded and poked, so he was up and active and thrashing around. I was the only one in that room who could feel how alive he was, so how could he have a condition that could potentially kill him? It felt like a nightmare that I couldn't wake up from. I left that room as a different person, and I knew my life would never be the same again.
If your baby has been diagnosed with CDH, please reach out. I will happily discuss my experience, and there is plenty of information online. I wish that I'd have had someone to talk to, who had personal experience of what this was like. It felt like all around me, people had healthy pregnancies, and no one could relate to what I was going through. If you are a fellow CDH parent, I would love to connect in the comments or on Instagram ❤️
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