Charlie’s Condition
Unfortunately, Charlie’s condition,
Transposition of the Great Arteries (T.G.A.) and a Straddling Tricuspid Valve over his
Ventricular Septal Defect (VSD) (the arteries leading into his heart are the wrong way round and there's also a hole in the bottom chamber with a valve crossing over it making it impossible to correct) is, and will be an ongoing problem for him. The Straddling Tricuspid Valve over his VSD cannot be corrected due to its position
. The way forward for him is to undergo further open heart operations in the months and years to come to help maintain blood and oxygen to his heart and he will probably need a heart transplant when he is in his teens.
Tell us how you found out Charlie had a heart condition? Charlie was born naturally at James Paget Hospital on 5th December 06; it wasn’t until 2 days after he was born that his breathing was noticed to be fast & heavy. He was moved to the high dependency unit and given antibiotics to help with what the doctors thought was a lung infection. Later that same day things didn’t improve so more tests were done including an ECHO, it was then that his heart condition was picked up and he was kept in SCBU in an incubator. Our worst fears that we could lose Charlie seemed just around the corner, but the professionalism of the dedicated staff of JPH helped to prevent this.
How did you feel when you found out? When Shelly and I found out how severe Charlie’s condition was, we asked the family to come to the hospital, obviously everyone was upset but the support Shelly and I received from our parent’s etc was a huge help. I remember being told by a doctor that Charlie had to go to Great Ormond St (GOSH) for an operation urgently, with a stiff upper lip Shelly and I hugged and prepared ourselves for the worst, we couldn’t believe that we may lose our son; we were just shocked and very emotional
So what happened then? After talks between the two hospitals, at about 1am two doctors arrived from GOSH, they assessed Charlie and prepared him for transport. Charlie was in the back of an ambulance in an incubator at 2.30am with Shelly beside him - with blue lights flashing he was rushed to GOSH - myself, my brother Paul, my sister Lindsay and her fiancé Mark followed in a car behind trying to keep to the speed limit. We arrived, I think about 5.30am - half an hour behind the ambulance – where we went straight to the paediatric ward where Charlie was being assessed.
And his first operation? Charlie’s first operation was the next day, it was minor but the stress and worry of it all was the same as any other. We were told that this was the first of three operations to be carried out, the 2nd and 3rd would be in a few months to come…anyway, Charlie was prep’d and taken down for anaesthetic - Shelly kissed him and told him to be a brave little boy before leaving the room - she was too upset and didn’t like to see him go under - I stayed and c
uddled him ‘til he was asleep telling him all the time that I loved him and to be strong, all the time he was crying which broke my heart. Once he’d fallen asleep I went to see Shelly, we hugged & hugged & hugged feeling that our lives were being torn apart, tears rolling down our cheeks like a wild river.
A couple of hours passed and we were told the operation had gone well, he was then taken to intensive care where he stayed for 2 days before being moved to HDU for another 2 days, then finally back to JPH for a night after which we were finally able to take him home, to his home, for the first time.
And since then?
Well Charlie has now had 5 further operations, 4 being open heart surgery, of which 2 were within a week of each other and all within the first nine months of his life. Each operation has been heartbreaking for both of us and the family and has put a tremendous strain on Ellen, Charlie’s 7 year old big sis.
Ellen has had to stay with Shelly’s parents while we were staying at GOSH, we both missed her so much but she was great and very understanding, taking it all in her stride as well as showing concern for Charlie.
What was the worst moment? The worst point was after Charlie had his 2nd op in February; a few days after this op an echo was carried and it showed the wall of his heart was starting to collapse meaning that he would need another open-heart operation.
The heart consultant (who didn’t mince her words) basically told us that they had never come across this problem before (in Charlie’s condition) and they were not sure if they could correct it, she said that Charlie was at high risk (about 20%) of not pulling through - now that may seem not that high to anyone that doesn’t know better but GOSH’s high risk is usually about 10% depending on conditions - also the fact that this operation would be a first for GOSH was not in Charlie’s favour.
The surgeons and consultants had to speak to their counterparts in America and Europe to see if they had experience with this condition.
Shelly and I nearly fell apart, we called our family and told them the news, they all came down the next day expecting the worst and prepared to say goodbye to Charlie. Fortunately the operation went well though the surgeons couldn’t carry out their preferred option (they had 3) but still everything was OK.
After 18 days at GOSH, we were allowed to take him back home where he has given us much enjoyment and love as any parents could give. Plus a few worries where we had to take Charlie to JPH because his oxygen level had dropped to 62% and concerns over poor weight gain.
So what does the future hold for Charlie? Charlie will need another open heart op around September time 2009 to help keep blood and oxygen flowing to his heart, this will be an ongoing problem for him, in the months and years to come he will need more operations to keep these flowing correctly and when he is in his teens, he may even need a heart transplant.
How do you cope with the fear of more operations and that you may lose Charlie?
You have too, you can’t run away from it, you have to be strong for Charlie, anyone who has been in this kind of situation will tell you that it’s not easy but you have to cope.
With support from family and friends you can overcome anything and that’s what we have had.
We are not religious but we have prayed for Charlie and I think that it’s helped us; we have asked God, why? Why us? Why Charlie? - But then we think of all the other little babies in intensive care alongside Charlie who were in a worse condition and thank the lord it wasn’t Charlie - a little selfish we know but you can’t help but feel that way.
We have to remember that Charlie is going through a lot more than us as parents; we need to be strong for him and when we see him recover from his operations and smile at us, that is all we need to get through
There was this little baby whose parent’s we both got to know very well, unfortunately the little boy died while we were there - it could have so easily have been Charlie, to see the parents anguish and emotions was upsetting and we wished they didn’t have to go through such awful suffering but at the same time we were relieved it wasn’t us but it really did bring home the fact that little babies do die, not all of them do make it.
We thank our lucky stars every day that Charlie is still with us, we both owe a huge THANK YOU to the doctors, nurses, consultants and surgeons of JPH and GOSH for the professionalism, skill and dedication shown towards us and Charlie, whom we know, saved Charlie’s life.
To show our appreciation to JPH we raised over £400 for the maternity and SCBU wards and for GOSH we held a charity night which (including donations after the event) has raised to this date (14/04/09) nearly £11.000! we hope to hold another charity night sometime in 2010.
We have created a web site
www.charliewoodheartappeal.org.uk to help us raise funds for GOSH, there you will find more pictures of Charlie and how we raised money for GOSH.