To Grow or Not to Grow | A Parent’s Decision

carys

This week, we have been called upon to make a tough decision about Carys.

She’s very small, about the size of a five or six-year-old, yet in nine weeks’ time she’ll be nine years old. Her hands and feet are tiny; she wears a shoe in an infant size 10 (Euro size 28, Us size 11), and it still has plenty of growing room. I believe that size equates roughly to the size of the average two-year old. Told you she was small.

All the blood tests have consistently indicated that she is producing growth hormone; it’s at the lower end of the scale, but it’s still within normal limits. She has grown in the past 18 months… by a whopping 6.5cm – woohooooo! But it’s way below where she should be.

In that time, she has also gained two kilos. That’s great news, because prior to that, whilst she was suffering so badly with chronic constipation and impaction, she lost weight, fluctuating between 17 and 19 kilos (37 and 41lbs). But the average nine-year old girl should weigh 28kgs. She’s the weight of a five-year old.

I have learned over the years not to get hung up on stats where Carys is concerned. The normal rules and milestones don’t apply. All that matters has always been whether she’s healthy and happy. Everything else is just ‘stuff’.

So, what her endocrinologist wanted to know, was how we wished to proceed from here.

It’s not as if we didn’t already know all this. It’s something we have been monitoring for a few years now. It’s not uncommon for children with Cardiofaciocutaneous Syndrome to be short of stature. Many of these children don’t seem to grow much beyond 4ft. Many don’t go through puberty. Their pretty faces age, but their bodies seem stuck in a time warp. the no-man’s land of the perma-child.

Not being very tall might not seem like much of an issue. I’m rather on the small side, myself. But in the extreme, it brings additional health and emotional concerns.

Like I say, if she doesn’t grow enough, her body might not be prompted to enter puberty. Good, I hear you cry, there’s nothing worse than having a moody teenager in the house! (I’ve already got one of those, and another imminently metamorphosing, so I know what you mean!).

Being small makes her easier to manage, from a parent’s point of view, in terms of lifting, carrying, and so on. But no growth means no puberty. What if she falls in love one day, and wants children? Highly unlikely, I know. But what if?

What if one day she realises how different she is from her peers? She doesn’t give a fig right now, if she has even noticed. But who knows how she’ll feel, or what she will be capable of thinking in the future.

Regardless of stature, it is not advisable to allow puberty not to happen. But looking after a disabled child with periods looks pretty daunting to me right now. Puberty can be ‘forced’ to happen with drug and hormone treatment, I am reassured by the doctor. Only, I’m not feeling very reassured.

What she needs to do is GROW. And therein lies the whole problem. She eats well, but it’s just not happening. Does she have lots of energy? Yes. Does she sleep well? Yes. Should we start Growth Hormone Therapy?

Does she really need it?

Probably. Yes. I don’t know.

Conor and I have talked about this a lot. We can’t get Carys’s opinion, so we have to decide for her. Growth Hormone treatment involves a daily injection. She won’t understand that. All she will understand is pain. Yesterday, she had blood taken for some tests. It took three of us to hold her down, and one to administer the needle. She fought really hard and screamed blue murder.

I would have to give her the daily injection. Me. At home. Sometimes by myself, if Conor wasn’t around. I’ve never given an injection in my life. Of course I would do it for Carys if I had to. I’ve had to do some crazy things for my kids that are well above and beyond anything a parent expects to have to do for their child. But I couldn’t restrain her and give the injection by myself.

I know people who have used GHT for their CFC child. In some cases it has worked. In some, it hasn’t. In some, muscle tone and strength improved,as well as a few centimetres of growth. But there is no guarantee of success. Although failure is not a given, either.

Yet again, Conor and I must play God with Carys’s life.

Rightly or wrongly, we chose against Growth Hormone Treatment. For now.

 

23 Comments on “To Grow or Not to Grow | A Parent’s Decision

  1. A very tough decision but I think two key things that you said support it. There has been some growth in the last few months and Carys is happy and those moments are one to keep hold of. Some children without development issues do not begin puberty until 13 or 14 so you have time to rethink the decision based on her general health and emotional wellbeing in a couple of years time. She has terrific parents who are doing what they can to ensure she is safe, cared for and happy.

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  2. All Invasive interventions carry an irreducible risk of serious harm. Just because we can intervene, doesn’t mean that we should. There is more than one way to be “normal.” I support your decision.

    Liked by 1 person

  3. I’m sorry, but now you’re just being plain silly. All you need is open the book you got when you became parents and look it up. You know, that one that has all the answers. The one called “how to be a 100% perfect parent and never have to make really hard choices that don’t seem to have a right or wrong answer.”

    What do you mean there isn’t one?? I always hoped I’d get a copy if I ever became a parent.

    In that case, all I can say is that I’d be doing the same as you in your shoes. Why put your child under so much stress for something with such doubtful results?

    Doesn’t sound to me like you’re playing God. Merely being a good parent. And that requires looking after you, too. It’s like on the airplane, when they instruct parents to put the oxygen mask on themselves first, then on their children, should the plane decompress.

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  4. For what it’s worth, that sounds like the right decision for now. You are not playing God, you are being loving, caring parents making the best informed decisions they can – which is what Carys needs most of all.

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    • Thanks Steev. It’s hard though, making choices like this, isnt it? The results are so far reaching. And although I genuinely feel gh would be of no benefit to her right now, I also feel guilty cos that’s convenient for me… it means I dont have to give injections, dont have to worry about managing menstruation, and she’s easier for me to carry.

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      • My son is nearly six feet tall and still expects me to carry him sometimes – in that way that his inner developmental toddler tells him to.
        If you substitute the word ‘pragmatic’ for convenient it gives it a better context. You are right though, making life choices for someone else is hard when I’m not even sure I do it well for myself.

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        • Ha! Know what you mean! 6ft wow, he should be carrying you lol!!! One thing we get from these kids that we dont get from their ‘normal’ siblings is demonstrative unconditional love, whatever decisions we make for them, and that makes everything so much easier to cope with, don’t you think?

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          • True – I think you nailed it with the last paragraph of your post ‘genetics’.
            I have to add, I don’t carry him often or far (mostly when he has ‘lost’ his shoes and needs to get from the car to the house)and he will hold on for a piggy back nowadays so not too much torture for my back!

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  5. A very difficult choice but I believe you made the decision so carefully and with much thought and information support you 150%. I know parents who hold off growth and puberty for some of the reasons you mentioned. Cary has wonderful parents and is a beautiful girl.

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    • Thanks Cindy! If only Carys was a little bit more self aware, we could probably be guided by her to some extent. I wonder sometimes whats going on in her head and wish we could unlock the secret, or at least a part of it. It would be lovely, and really useful!! To have some level of purposeful communication with her.

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  6. Wow, Ali, that is a tough decision for you and Conor to have to make. Whatever decision you make now or in the future, I know you make it out of love for Carys and trying to do the best thing for her.

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    • Thanks Rachele! We do our best for her, that we can. It would be so much easier if there was a clear cut right or wrong, but there rarely is in parenting, is there?

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