GHD - but not the hair straighteners...

I can't remember when I first knew I was smaller than other kids my age. I certainly don't have any memories  of when I was first diagnosed with Growth Hormone Deficiency and started receiving treatment. This used to be injections twice a week, given by a nurse.  Eventually, as the dosage and medication changed, the injections were daily and my parents had to learn how to administer them.  They used to practise on teddies and oranges. Although they only used water, they used to joke about coming down in the morning to giant bears and fruit! When I was 13 I went on a dance tour for 3 weeks so I had to learn how to give myself the injections; something I really never learned to do more then tolerate.

We would travel for a check up every 3 months. (My sister also has GHD, so it was a family day out!)  We got to miss a day of school and always had chips on the way home.  That was the good bit.  We also frequently had blood tests, x rays and a doctor who always got a slightly higher number then our actual height out of the check up by stretching us up by our chin - painful!

Growth Hormone Deficiency is a hereditary, well, disorder, I guess, rather than illness.  In my family it comes from my Mum's side.  She had 2 uncles who were small, but neither had kids.  She is one of 6 kids; 3 of whom grew normally and 3 of whom also had GHD. My mu had 2 daughters and my sister and I both have GHD.  My sister has since found out that we had a 50% chance with each our kids of them also having GHD.  This has proven to be a very accurate statistical prediction as we each have 2 kids and in both families 1 of them has grown well and 1 of them has turned out to need treatment for their growth.

In my case it is Adam, my younger son (pictured here showing how big he is, but cheating slightly...) who more or less stopped growing when he was about 4 months.  His check ups at the local clinic showed such small amounts of growth for several months that it was pretty clear pretty early on that he was likely to need some help with his growth.  My niece had just been diagnosed, so it was not hard to figure out what was going on  When we went to Crumlin children's hospital for the first time to meet the consultant, I really wasn't sure how seriously we would be taken and how many months they might decide to monitor Adam's growth before starting treatment. So, I took my mother with me!  She was a brilliant illustration of our family history and the consultant was actually delighted to see 3 generations of GHD patients.  We were very pleased that he started Adam on growth hormone medication just 2 months later at only 14 months old.

It is very odd to take your child to their growth check ups every few months as a parent when you have such vivid memories of being taken as a child! The clunk of the measuring bar as it came down sent a shiver down my spine the first time Adam was old enough to be measured standing up.  His latest visit was last Wednesday and he is growing so well!  On our first visit, he didn't register on the growth chat at all for his age he was more or less under the 0% percentile! On Wednesday he registered at the 75% percentile! It is truly astonishing to be told by random strangers at the playground that he seems tall for his age!  That certainly never happened to my sister or me, but the medication has been developed since the '80s and we can expect Adam to achieve a completely normal height compared to his peers, which is just brilliant.

2 final thoughts on this:

I am immensely grateful for the Drug Payment Scheme in Ireland which covers his medication.  Apparently, the full cost would be about 15000 EURO per year. We do hit the full monthly charge every month, but that's much much less than the total should be.  I wrote to Mary Harney while she was still Minister for Health to express my thanks for this as I don't take it for granted!

And lastly, a visit to Cumlin absolutely exhausts me - I come home every time feeling flattened. Then I remember that Adam isn't sick in any way and that there are parents visiting the hospital while I am there to bring their kids to chemo appointments or to have serious and life limiting diagnoses confirmed.  Every time I come away wondering how they cope with the emotional and physical exhaustion this must bring. I hope I never have to find out.