Neil, GHD
- UK
Neil’s doing so well – it’s amazing! You weigh up the pros and cons, and the pros far outweigh the cons...
In the words of Shelagh, Neil's mother
Neil was always tiny for his age. He had the skinniest arms and legs you’d ever seen, with no fat or muscle on him, except for a spare tyre around his tummy. He was constantly sick as a child. He had viruses all the time and frequent spells of vomiting that would go on for days. And he was very lethargic, though he never slept, not for like 6 years. I remember he was so weak, sometimes it was a strain just to hold his head up.
Neil wasn’t growing at all. He never outgrew his clothes, and he would shy away from physical activity, so he never wore out the ones he had. I was a first time mother and like most first time mothers, I was protective of my child. When he got sick, I would take him to the doctor. But most of the time, the doctors would accuse me of over-mothering him and refusing to let him just grow up. They were so condescending. They would tell me, “He’s fine. He’s just got a virus. Send him to school, and he’ll grow just fine.”
I always knew it was more than just a virus, but for a long time I listened to the people who are supposed to know what they’re talking about, and I actually questioned whether or not I was being a good mother to Neil. Now we know that Neil’s got Multiple Pituitary Hormone Deficiency, which means that his pituitary doesn’t produce most of the hormones that it should, and he’s had the condition since birth. In fact, he was very sick just after he was born, and the doctors should have picked it up then, but they didn’t. I’ve come to realize that the knowledge of ordinary, local GPs about hormone deficiencies is non-existent. But for years, the advice of those GPs made me doubt my own instincts as a mother and created a real barrier for me. I simply couldn’t make the doctors take me seriously back then.
At 7, Neil was the size of a 3-year-old. And though he looked 3 years old, he spoke like a 10-year-old, probably because for years his only real activity had been engaging in conversation and developing his vocabulary, which made him seem really endearing in a way. The girls at school used to mother him all the time. I remember the turning point for me was when he was given the part of the smallest angel in the school nativity. I just got so fed up that I threw a tantrum and demanded that the GPs listen to me and take a closer look.
They finally agreed to refer Neil to a specialist at a clinic in central London. Normally, we would have been referred to our local hospital first, but our local hospital didn’t have a paediatric endocrinologist, so we were sent straight to the consultants – the real experts in child growth disorders. We were surprised when we found out that we would have to wait several more months before Neil could get tested. But then we learned it was because Neil’s growth hadn’t been measured in over a year, and the specialists wanted to see not only how tall Neil was, but also hot fast he was growing, so they had to measure him over time.
We started to do some reading during those months, and we learned that Neil’s growth delay could have something to do with the pituitary gland. I think I was sort of scared about finding out too much, because some GP had mentioned that it could be a tumour. He should have just told me that unless the child has severe headaches and all sorts of other symptoms, there’s little chance of a tumour. He should have seen that Neil’s condition was a pituitary disorder.
Eventually, I realized that growth hormone could be the source of the problem, and I learned that growth hormone treatment could be given to replace what Neil’s body lacked. I remember I made the decision right from the outset that whatever he needed, whatever was available, I would make sure as a parent that he got it – no question whatsoever.
When it came time to diagnose Neil, the specialists did a series of tests. They took some blood samples and performed a brain scan that basically showed that Neil has just a teeny weenie bit of a pituitary gland. After all that time of struggling to be seen by a specialist and then waiting to be measured, the whole procedure was really no big deal. We got the diagnosis very quickly, and it was such an incredible feeling to finally know what had been causing Neil to be sick and small all those years – to finally be able to put our finger on something concrete and put an end to the mystery and confusion. As much as I would rather Neil didn’t have anything wrong with him, it was nice to finally know that it wasn’t my fault.
They wanted to start Neil on growth hormone immediately, but that was not to be. The process for prescribing growth hormone in the United Kingdom is a bit complicated, because each local Health Authority controls the overall budget for all the doctors and hospitals in that area. The process varies from one Health Authority to another, but in our case, the Health Authority didn’t want to pay for the medication, so our GP couldn’t prescribe it. It turned out our Health Authority had drawn up a list of expensive drugs that they were sort of urging their GPs not to prescribe, and growth hormone was on the list. That was more frustrating than anything, after all we’d been through to actually find out that something was wrong and know that something could be done. So when they tried to deny Neil treatment, I felt like pulling my hair out, and I literally went to war with the bureaucrats in the Health Authority.
Fortunately, at that point, the consultant in London stepped in and decided to just prescribe it himself out of the clinic’s own budget. He’s been so wonderful. He didn’t have to do it, but in his own words, he had to “put the child before politics and prescribe growth hormone.” So the consultant actually supplied it for the first 5 years. They used to give us 10 weeks worth of growth hormone at a time, but then their policy changed so they could only give 4 weeks worth, which meant I was having to spend half a Saturday each month as well as a fair bit of money just to take the train into London to pick the stuff up. At that point, I decided to call our local GP again, and I said “This is isn’t right. You’ve got to start prescribing it.” I think that by then, the system had probably changed so that GPs could get the Health Authority to extend their budgets for costly patients like Neil, and so our GP finally decided to go ahead and prescribe it.
I think all the adversity I faced getting Neil diagnosed and getting growth hormone prescribed for him probably did me and Neil a favour. All that struggling made me so much stronger as a mother. I’m a very different person now in terms of my kids. If I think there’s anything wrong with them, that’s it. I’ll move heaven and earth. And now that I’ve had to do that, I’m ready to do it again in a heartbeat, and thank God for that.
Once Neil started taking the growth hormone, he was like a different child. It was just unbelievable. And he really grew. I mean, it was like we could actually watch him growing. I had to keep buying him shoes. It seemed like a new pair every day. And he was just so much more lively than he’d ever been before.
Neil used to be so small that he would never get picked on by the other boys. But as his height became more and more normal (and this may just be an inevitable part of growing up), he started to get the normal bullying that boys of that age get at school. But, I mean, it was wonderful – his first fight! It was brilliant! Because it happened, and I knew that no matter how I as his mum might feel about it, it was good for him. He could stand up for himself, and he loved it! He won a medal at judo recently, and it was a well won medal. I mean, he really earned it. He’s got muscles now, and he wants to use them. He really is a totally different child.
Neil has always injected himself, ever since he started taking growth hormone at age 7. It’s never been a big deal. He does it while he’s watching telly. In fact, it’s been so successful that we’ve become very blasé about it. Now that he’s a teenager, we sometimes have to nag him to remember to take his injections, but he’s almost never missed one, and he’s never had any problems or side effects.
When Neil first started taking growth hormone, the doctors said that he’d lost a lot of his genetic potential. They said that because he was starting the treatment so late, he would only reach a maximum height of 5’6”, which is shorter than both his father and me. But then that projection got upped and upped again, and now they’re saying he’s going to be 5’11” at the very least! If you could have seen Neil seven years ago, he was like this sickly child. Now, he’s just doing so well. And people come up to me and say, “My God, look at him! He’s taller than a lot of his friends. He’s quite intelligent. He’s a nice lad!” It’s amazing!
