Jack’s Story - Congenital Diaphragmatic Hernia (CDH)

In 2015, at my 20-week scan, I found out that my son, Jack had right-sided Congenital Diaphragmatic Hernia (CDH). I was devastated. I didn't know what it was, and I wondered why me? How did my child develop it? I went to University College London Hospital (UCLH) to have all my scans done. The doctors told me that CDH only had about a 50% survival rate and that having right-sided CDH is rare. If they could stabilize my child, they would transfer him to Great Ormond Street to have his surgery. What seemed like not long after, the doctor notified me that my child had stopped growing, and it was best not to wait any longer as he could die inside me. The next day, I went into the labor ward, and on October 29th, 2015, I was induced, and my son was born. He cried and wiggled when he was born. Just before rushing off to intubate him in the NICU, the doctors gave me just the shortest moment to see my son and welcome him into the world.

I went to see him the next day in NICU, where he was on a breathing machine. He had wires all around him. They decided to take him off the big breathing machine to go on the smaller one. With the switch being successful, they transferred him to Ormond Street, where he stayed for a bit. He had his repair surgery at 3 days old. A week after his surgery, they tried to take him off the breathing machine. Their first try wasn't successful. They waited two more days and tried again. The doctors were able to get off the breathing machine. Once off the machine, he was allowed to go to the high independence unit, where he stayed for the next 2 months.

During his 2 months in the ward, my son had his ups and downs. He had one blood transfusion. In December, he was transferred to his local hospital. Finally, in January, he was discharged with no oxygen or NG feeding tube. He is doing so well now. If it wasn't for the wonderful care at UCLH and GOSH, my son might not be here with us. The medical team helped him so much, and I can't thank them enough. I'm grateful he went to the best hospitals to receive treatment. The UCLH and GOSH staff was very supportive.

Jack is almost 6. He has had a bumpy ride. We have had lots of appointments and even a stay in the hospital because he had a bowel obstruction. Luckily, no surgery was needed for his bowel blockage, but we have been told it will happen again. While he is still facing challenges, he doesn't let them get in his way. He is my Tiny Hero!

Here are some of his appointments: physiotherapy, respiratory, sleep study, lung function test, and an echocardiogram every year. He also sees a surgical consultant and neuromuscular doctor. Jack has hypermobility syndrome and many other medical complications.

We always keep a close eye on his weight since he isn't a big eater. Regardless of what we put in front of him, he won't eat it unless he is really hungry.

All in all, he is a happy child and doesn't let anything get in his way from accomplishing what he wants!