In the early days and weeks of motherhood the feeling of overwhelming responsibility, coupled with sleep deprivation and not really knowing exactly what has happened to life as you know it makes being a Mum feel, at best, challenging and, at worst, insurmountable (probably directly correlated to levels of sleep, or lack of it!) With time, and a bit more sleep, life as a Mum becomes more settled. Settling in to parenthood through the baby and toddler years are undeniably tough, but you have complete control over your child and all that fills it’s world, as children get older the moment to moment relentlessness abates but the great challenges of parenthood continue.
This month marks a year of my eldest son having daily growth hormone injections, a decision which was tough to make and took a considerable amount of thought, discussion and deliberation over nearly two years. He was born small for gestational age and, as a baby, had a dairy protein allergy which was undiagnosed for 6 months and really wasn’t well managed until 9 months (another post entirely!) This caused a lot of distress for him and his weight gain was slow but steady. With monitoring I was reassured that all was well and he was thriving. I am petite and only make 5 foot with a lot of yoga and very good posture!! I was reassured he was taking after me. Until he was 3 when my husband attended a hospital appointment with us and the Doctor queried my son’s height. The Doctor informed us that because my husband is a good foot taller than me our son should be more of an average size and that he was just hovering around the lowest centile which was a cause for concern. It was quite a shock as at most other appointments I had stated the height of my husband but it had never really been taken in to consideration, the Doctor explained that it was now of concern because of to my son’s age and not having ‘caught up’. The Doctor wanted to do a few tests to check there were no underlying reasons for his small size and referred us to an endocrine specialist. Thankfully there was no reason found for my son’s small stature and ‘idiopathic short stature’ was diagnosed. It was at this point that growth hormone treatment was initially discussed; NICE guidance recommends that babies born small for gestational age with subsequent growth failure at 4 years of age are eligible for growth hormone treatment (NICE, 2010.) After close monitoring and the agreement of two Doctors we had to make a decision whether to agree to the growth hormone treatment or not.
What a decision to make. If there had been a growth hormone deficiency then the situation would have been clear cut, the injections would have been medically necessary but in our case there was actually no medical problem. He was born small and was just about growing along the lowest growth centile. What is wrong with being small?? From my point of view, it can be a bit of a pain trying to find clothes to fit and annoying when you get trampled on in a crowd or can’t see at a concert, but it has never held me back. It has never made me unhappy. We researched the evidence underpinning the NICE guidelines and the research on how short stature can psychologically and emotionally effect children and adults. The evidence we read was not particularly conclusive to our minds; the use of growth hormone for this reason may or may not be effective and can only be proved effective in retrospect once the child which could potentially lead to daily injections for no real change in growth, and being small really didn’t greatly effect the overall emotional wellbeing of small adults. I looked around for the parents’ perspective; I wanted to see if there were any parents who had shared their experiences online but I couldn’t find any. I think this is part of the reason I wanted to share our experience here, if this helps another parent in a similar position it has been worth writing. We were, and are still, aware that our experience of struggling with our son’s health has not been life threatening and there are many families worse off than us. However, there are significant potential side effects of the treatment and committing your child to daily injections which has possibly questionable medical need is a tough decision. As we went over and over the decision we also considered what would happen if we chose not to go ahead with the treatment and all other parents in our position did? Would our son be even smaller in a growth hormone treated world? What if we didn’t accept the treatment and he turned around as an adult and asked us why? Throughout the process we did discuss the options with our little boy, albeit on the level a 4/5 year old can understand. Eventually we decided we would follow the evidence underpinning the NICE guidelines and opt for the growth hormone treatment, with our son’s agreement.
The following year has not always been an easy, although our son was in agreement for the injections the idea and the reality are two different things. Having had blood tests for various reasons since he was a baby he is particularly averse to needles and a daily injection for any child is not an ideal situation. The initial introduction of the injections was a difficult period; it was a daily battle of negotiations and tears all round. After this we had a ‘honeymoon period’ where everything improved for a while, then the reality of daily injections for an indefinite period of time has worn thin and he will often cry about having the injections. It’s really hard for us all. Trying to explain that when he is a grown up he will thank us for this when in reality that will only happen in three times of his current lifetime, and that is if it works at all. It is still early days but there seems to be some effect on his growth, with no side effects noted, so the injections are continuing for now and we have everything crossed that it will all be worth it.
This is just one of the many decisions we have taken as parents for the good of our children. Daily all parents are weighing up the evidence about what is best for their children; physically, emotionally and with regard to their educational and moral wellbeing; making decisions on their behalf. Every decision is thought through and made with love because we all want the best for our children. Children are gifts, hands to hold and souls to guide until they grow and become in charge of their own lives and their own decisions. That is what makes being a Mum so hard; when making a decision for yourself if you make a mistake you are only answerable to yourself. If you make a decision for your child that doesn’t work out well it is your child you will have to explain it to. That is a great weight to carry on our shoulders as parents. Growing pains for children may be entirely physical, but for parents the absolute joy yet pain of watching your child grow really is the ultimate sacrifice of love. However, if all the decisions we make come from a loving heart and to the best of our knowledge then we are doing our best. And that is all we can ask of ourselves. If my children ever question the decisions that I make that is what I will tell them.
Please Note This post is written from my opinion as a parent based on what I have read, for this reason I haven’t extensively referenced the research I read as part of our experience. This should not be taken in the place of medical advice and if you have any concerns with regard to growth hormone treatment you should consult a doctor.
NICE (2010) Human growth hormone (somatropin) for the treatment of growth failure in children. https://www.nice.org.uk/guidance/ta188/chapter/1-guidance (accessed 13/02/17)