Our First Christmas
We celebrated our first Christmas and New Year with family and friends, Alex wasn't well and we continued to be concerned for his well being.
On the 4th January 2000, Karen called the Health Visitor who agreed there was a problem. She called in another GP and strongly expressed her view that
Alex was not a well child. This GP listened and examined Alex and advised that we took him to our local hospital for a more detailed examination.
Karen took him down and I came home early from work to be at the hospital.
The Journey
Once we were at Crawley Hospital, Alex was examined and an Echo (Echo Cardiogram - Video) was taken of Alex's heart. This takes about 15 minutes during which the consultants can watch Alex's heart. We watched anxiously as the consultants / staff reviewed the results (One of the consultants just happened to be from Great Ormond Street Hospital in London and was visiting Crawley on that day!). They could not believe the results, how could Alex be keeping himself going, his heart had major defects which needed immediate surgery.
As the reality hit home, Alex was prepared and rushed to Great Ormond Street Hospital (GOSH), we didn't have time to collect our thoughts as we also drove up to London. Whilst you try and remain positive, negative thoughts do enter your head, will he be alive when we get there? How long does he have left. We eventually got to the hospital and found Alex who had already been connected to a number of monitors. We saw the consultant (who would eventually operate on Alex). His news was grim, they had done a further Echo and discovered more problems for Alex. He needed surgery within the next few days if he was to survive. We had to face up to the reality that we may lose Alex after only having him for a few precious weeks.
The Operation
The days to the operation were slow, we stayed at accomodation provided by the hospital and tried to find out as much information as we could about how all of this would affect Alex hoping that he made it through. The day of the operation finally came, Alex was prepared and we said our goodbye's. We walked miles into London that day just to pass the time, mobile and pager on, awaiting any news.
We arrived back at the hospital and met the part of the team who operated on Alex. We were allowed into the CICU (Cardiac Intensive Care Unit) to see him. All we saw as we walked in were a small number of futuristic medical stations, each containing a multitude of machines. Somewhere in the middle of one of these stations was Alex being attended to by a dedicated Intensive Care Nurse. His chest was still open and we could see his heart beating, whilst initially a shock, it was also one of the most moving sights that either of us had ever seen as Alex clung on to life.
The good news was that Alex had made it through the operation, although the next 24hrs would be critical. That night we nearly lost him again as they had to perform a further operation. However he came through that as well although we understand that it was an extremely close call. Over the next couple of weeks whilst he remained CICU we visited him at every opportunity, hours merged into days, the visits to Alex became the focal point around which all else revolved. Friends and relatives came to visit and offer support for which we were very grateful.
Post Op Discovery
Alex was doing well in CICU, he seemed determined to cling on to life. During this period we were asked to see the genetics team as they had some things that they wanted to go through with us following a number of tests on Alex.
We went into a small room and sat down not quite knowing what to expect. The news hit us both very hard, Alex has a genetic disorder which means that part of his number 16 chromosone is missing (16p 13.3 deletion), in effect his DNA sequence is incomplete. There have been less than 10 reported cases worldwide with this disorder, it doesn't even have a name. So what we asked? how does this affect Alex? They told us that Alex would have learning difficulties which could range from being a virtual toddler for all of his life or being at best semi-independant as an adult.
As Alex's health was worse than the other reported cases we were warned to prepare ourselves that he probably would not walk or talk and may struggle to sit unaided. In addition he could have a variety of other problems, there isn't enough data to benchmark against.
At this point we questioned ourselves, what did we do to cause this? what could we have done differently? How will we cope with a child with Alex's special needs? These were all unanswered questions.
Coming Home
After about three months of living in London we were finally able to bring Alex home. We were filled with mixed emotions, great to be able to come home, but how would we look after him given that he has had 24hr Medical Care for most of his life? Karen became a full time nurse and carer for Alex. The medication that Alex needed to survive filled our fridge, Karen learned how to measure and administer all of the doses needed every few hours day and night.
With Karen having to give up her career to look after Alex, I needed to find another job to provide more income. Fortunately I was able to secure another postion, which meant that Karen was able to stay at home and dedicate her time to Alex.
Over the next few months we adapted to life with Alex, family and friends were great. He was in and out of hospital on a regular basis for one thing or another, but after 18mths this became less necessary. We also began to find out about what support services were available locally. At this time we discovered groups such as Heartline, Unique and Portage all of whom have provided much needed guidance on how best to care for a child with Alex's special needs.
The links on the home page take you to the respective websites for these organisations.
The Early Years
Alex continued to improve and his stubborness not to give in on anything started to shine through. He had two further catheter operations on his heart to try and widen his aorta, these were partially successful. Other problems became apparent as he grew older, he is currently seeing Specialists at Great Ormond Street about his eyes and ears. It is a voyage of discovery for them as mush as it is for ourselves and Alex.
He has settled in well at a local nursery who are able to help him with his special needs. He can walk and is remarkably active for a child who was so sick, he will always have learning difficulties but with the support of family, friends and those who spend time with him he will still lead an enjoyable life.
Recognition and Support
Firstly our thanks go to everyone at GOSH, what they achieve is truly remarkable given some of the constraints that they work under. We hope that that you never have to visit the hospital in London, however we should all be proud of what they achieve each day. Our thanks also to the local support groups, private therapists and nursery who all play a key part in Alex's development.
Finally our thanks to you for reading this website, whilst you are clearly under no obligation to do so, if you can make a donation to GOSH or any of the charities detailed in the links it would be gratefully received.
If you find yourself in a similar position to where we were and are not sure where to turn next, we would like to hear from you. If you live in the UK we may even be able to provide some practical suggestions. Please contact us via the link on the left.
