Our story begins very much the same as many families story does. We went for our 20 week scan only to be told that something may be wrong. After spending what seemed a lifetime in a side room, we were told that our precious little baby had CDH and they couldn’t tell how big the hole was and gave us about a 30% survival rate. It was just before a bank holiday so we had a very long wait before we could see the specialists at QMC in Nottingham. The usual tests were carried out and found to be OK. We were actually quite relieved to then be given a 50/50 chance so although a termination was discussed, we decided to fight for our baby. Sam was born naturally after an induction at QMC on Thursday 06/01/2005. He was whisked away like we were told he would be but managed a yell on his way!
What followed was 3 months of highs and very low lows. He was doing quite well and stabilising but on the Saturday night we were told to expect the worse. They had done everything they could for him and it all depended on whether he was a fighter or not. Carl drove down to Nottingham from Sheffield at 3 in the morning to be with him. To everyones amazement, he pulled through and they did his op on the tuesday. They found that Sam had no diaphragm on his left side at all and had to sew a patch onto the muscle wall and a major blood vessel.
Sam stayed on a ventillator much to his disgust as he kept pulling it out even when he was meant to be sedated – very strong willed even at 2 weeks old.
At about 4/5 weeks, the doctors were worried as he showed no signs of breathing for himself and everytime they tried to put him on CPAP, he desaturated and couldn’t cope. They found that he had a leak in the wall of one of his tubes which allowed the fatty acids of his milk to get into his chest cavity. This put pressure on his already very small lungs. They put him a drain in and put him on lactose free milk and hoped it would mend by itself.
Once again, Sam showed that he could overcome whatever stood in his way.
At about 9 weeks, Sam came off the ventilator and started to manage on CPAP and quickly progressed onto oxygen.
He was getting a bit too old at this point to be in the neonatal unit and should really have been on paediatrics but the nurses had really took to him so decided to keep him (and all his toys, annoying music mobiles and swing!) until he was fit enough to move.
At about 10 weeks, the doctors started talking about Sam being allowed home and having oxygen piped into the home. They said he might need it for up to 2 years. This was a daunting but exciting time. How would we cope? No nurses to tell us it was ok. What would happen if his condition worsened?
I stayed with Sam in the hospital side room on the 17th March 2005 to make sure I was happy with dealing with the oxygen but that night he decided that he didn’t need it and was transferred up to Bassetlaw hospital the next day – my Mum’s birthday, what a present.
Sam was doing so well that the allowed him home 3 days later and no oxygen needed.
He is our little miracle and other than a bit of speech therapy, Sam has thrived like any other healthy child.
Sam is 6 now and is a lively, funny and fantastic boy who loves his martial arts. We obviously have to keep a close eye on him as there is the risk of his patch tearing and needing further surgery but we have to allow him to live his life to the full and make the most of everything that he does as it could have been so different.
It has taken me 6 years to write this story and going back over all the pain and anguish again reduces me to tears. We are one of the lucky families who get to see their cherub grow up but we are grateful of every second we have with Sam because we know we were so close to losing him.
In 2007, I gave birth to Teddie. Sam now has a younger brother and a very good friend who luckily, did not have the problems that he had.
Our hearts go out to the families of all the cherubs who have grown their wings too early x
- 0800 731 6991
- committee@cdhuk.org.uk
