Amy Smith’s baby girl has CDH
Do you know what CDH is? Do you know someone who does know what CDH is?
CDH is the abbreviated name for Congenital Diaphragmatic Hernia, which occurs in approximately 1 in 2500 births and accounts for around 8% of all major congenital abnormalities.
Amy Smith, 27, a mum of two from Croydon, is 28 weeks pregnant with a little girl who has CDH. Through her research of the disease she has come to realise how common the disease is, and wants to share her story to spread awareness.
“On August 28 2013, I was hit with the bomb shell my little baby I was carrying had CDH. This was something I had never even heard of, but I was about to learn hard and fast just what these three little letters would mean.
I am a 27 year old mum of two, Billy (8) and Toby (1). When I found out I was expecting a little girl, to say we were over the moon was an understatement. I knew then that my little family was almost complete and life was going onwards and upwards.
Everything was going to plan until I went to my routine 20 week scan. While there, the doctor was having trouble finding all the chambers of the baby’s heart, so I was asked to go home and an appointment would be arranged for a specialist to scan my little girls heart during the week. As anyone would, I went home and began to search all of the different problems that may be present, not knowing at this stage what the true problem was.
Sitting in the waiting room for my scan was a stressful time. It seemed to take forever but we were relieved when she said the heart was fine but it had been pushed over to right by the lung and this was a result of one of two things.
“A cyst which normally disappears on its own and don’t have that much of a concern, or CDH,” we were told.
We were later told that it was a right sided diaphragmatic hernia and we had to discuss my options. Naively, I thought he meant her surgery options, but no, he was offering me a termination. The thought didn’t even enter my head; I couldn’t believe he was actually saying it to me.
He explained that she had a hole in her diaphragm and her liver had gone through the hole into the lung space, which meant the lungs didn’t have room to grow. He also explained that when she is born she will need an operation to bring the liver down, and then put a patch on the diaphragm.
When I got home I had a look online and came across a website called CDHUK, which explained thing a lot more clearly. I started to feel more positive about the situation. A lot depends on when she is born and if she is stable enough to get through the operation. I cannot wait to see her on my next scan, to see if things have improved or changed slightly.
There is an amazing charity called CDHUK, which supports families and their babies and children as effectively as they can. As well as offering information, advice and news on all aspects of CDH, they thrive to raise awareness of the disease and to educate the general public and medical profession.“
Photo courtsey of Amy Smith, with thanks.
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