From birth, Cameron had been very unwell. Despite reassurance from Healthcare professionals, Cameron fell unconscious at four weeks old and almost died. He was sent home from hospital a week later, undiagnosed. At a year old, Cameron had stopped growing. His Dad, Stuart, tells their story.
Cameron was our first child and after a very quiet pregnancy, was born foot first breech and 4 weeks early. His birth was very traumatic for him (and Mum!) and he spent a few weeks in SCBU recovering. He had a paralysed arm and had a lot of bruising, which in turn gave him jaundice. He was small at 4.5lbs and also quite thin, with none of the usual baby fat, so they decided he needed to be fed as much as possible to help him gain weight. He was eventually discharged with his arm working again and jaundice gone — with instructions to keep on feeding him as much as possible.
After 2 weeks at home and feeding on demand every 3–4 hours, day and night Mum and Dad were exhausted and when one night he didn’t wake us for a feed, we slept on until 6am. We realised that this was out of the ordinary and given how ill he had been following his birth, we hardly dared to look in the cot. We did though and what we saw was Cameron fast asleep. We had to wake him for his feed, but he was still sleepy and uninterested in food. This went on all day and we had to wake him each time we needed to feed him — and he still wasn’t interested. We asked the health visitor to call in the next morning and take a look at him. We were also surprised to find that he hadn’t had a dirty nappy all that day. We knew something wasn’t right. All he wanted to do was sleep.
The health visitor reassured us that he was fine and was just tired after his traumatic birth….. 4 weeks prior! When he was the same the next day, we asked her to come back again and she once again reassured us he had no temperature and was fine. We should wake him up to feed and give him brown sugar and water which would work as a laxative.
Day 3 and no change, so we decided to take him to our GP. Mum said that she had a feeling something was wrong and despite the HV’s reassurances we needed to get him looked at. The GP said he was dehydrated and lethargic, but had no other signs of illness. The GP said we should take him to the hospital and he would ring ahead to get the paediatrician to look him over.
We got to the hospital and the paediatrician was doing his rounds — 20 minutes later, with Cameron out for the count in his baby seat as per the last 3 days, we walked up to the SCBU with him. The nurses recognised us and were surprised to see us back again. They said he couldn’t be allowed back into the SCBU proper because he had been out into the outside world and could be carrying an infection, so they showed us to another room. Once they examined him, they immediately bleeped the doctor and he was being treated. The doctor said he was very ill and wasn’t asleep, he was unconscious.
That night was the worst of our lives, as Cameron deteriorated and came close to dying. In fact we have been told since that they struggled to stabilise him and he was within 15 minutes of reaching the point of no return. Return he did though and he bounced back by the morning. He remained poorly for another week and after being on a drip for days and a lot more feeding he perked up again and was discharged (undiagnosed). They had no idea what had caused this sudden deterioration, but they had found evidence of a small bleed on his brain having taken place. This still didn’t fit with the symptoms he had displayed though.
12 months later, Cameron had stopped growing. We had never had to cut his hair or his fingernails since he was born and he had very dry skin. We mentioned this at a couple of his appointments with the paeds, but the reply we got was that he was just small because of his prematurity and he was lucky to still be healthy after what he had been through. We weren’t satisfied with this though and once again we knew things weren’t right. It wasn’t that he was small — it was that he wasn’t growing now.
Eventually, we decided to press the doctors further and not be fobbed-off. We had another appointment with the paeds and pressed for a referral to someone who would investigate further. The paed spoke to Dr Gary Butler at Leeds General Infirmary, who suggested certain tests. The results were sent back to Dr Butler and he asked us to take Cameron to see him. He confirmed that Cameron was lacking some of his pituitary hormones and he would like to repeat the tests at Leeds. Sure enough, the tests confirmed that Cameron had MPHD.
Cameron went on to growth hormone at age 18 months and also was given hydrocortisone and thyroxine to take daily. From that day, his growth restarted steadily and slowly and he because more robust and ‘healthy’ looking. We have stuck to the regime since then and after Cameron was also placed on testosterone at age 13, he grew a lot faster. He is now 17 and at college 30 miles away studying software development. He has reached 5’8” and over the years he has taken part in competitive swimming and kick-boxing amongst other sports. He is less active now, preferring to sit at his computer, but he is happy and healthy. He has recently been transferred from paediatric to adult services and has a new consultant and endocrine nurse. He has also now stopped growing and he’s a bit sad about it. After all those years of taking medicines to try and grow, it is hard to come to terms with it being over with. He still has to take growth hormone though and always will.