Well were do we start to share our experiences of CDH Alex’s journey is still ongoing and he is still in hospital but he has overcome such much and is such a warrior and a fighter and as one of the doctors here is Oxford calls him ‘Brillant Biddle”. My pregnancy progress normally until we got to twenty weeks I had a feeling something was not quite right and this was confirmed during the scan at Stoke Mandeville the sonographer had a serious expression left the room to consult a colleague and then came back she told us that they was a large hole in Alex’s diagraprhm we were in shock at this point and in tears she said we would be referred to the John Radcliffe Hospital in Oxford were this would be investigated further. When that day came and we went to Oxford Alex’s CDH was confirmed and they said they had never seen such a large hole- his intestines and liver were in his chest, his left lung was squashed and his heart was pushed to the right everything was explained to us and what this would mean in terms of surgery and the consultant said some people choose not to go ahead with the pregnancy but after many tears and discussion something told us we must continue.
After a few appointments at Oxford and many scans later it was suggested to us by Dr Impey that we should consider Feto surgery at Kings College at London (which involved placing a ballon in his right lung to help increase capicity) as Alex had such a severe hernia it would greatly increase his chances of survival which at that point were only 25%. We opted to go for this as far as we could tell this was a bit of a no-brainer
So we met Professor Nicolades and the surgery was completed. The ballon was removed a few weeks later and shortly after our little ‘champ’ entered the world. Alex’s surgery was performed when he was a week old and went well, perhaps too well as just over a week later on Friday 13th no less he had a cardiac arrest and almost died one of the alevioi in his lungs burst leaked into his chest and further comprised the heart, a chest drain was inserted to try and ease the pressure and we had a conversation that every parent dreads with the doctor ‘Your son is not going to make it thorough the night prepare for the worst’, our warrior made it thorough the night and slowly improved but was placed on an oscillator ventalitor where he remained for the next three and a half weeks, a while later his kidneys stopped working again we had a horrible conversation with the doctors, ‘We don’t have alot of options left we will try a water tablet if that does not work you have to consider his quality of life etc”
Again we all fought on as a family and Alex did continue to improve and got himself off the oscillator and on to a normal ventalitor. After many attempts to get him off a normal ventalitor the docs decided it would be wise for him to have a trachestomy, which was completed and after three and a half months he made it out of intensive care and up onto the ward were he is on a mobile ventalitor and is continuing to improve, he will be in hospital for a little bit longer but when you consider where he started from to get here is an amazing achievement and we are so proud of him to anyone out there who is going thorough this there is always hope, our little ‘warrior’ is living proof.
Sadly Alex lost his battle with CDH on 11/08/12 at 15 months old