Realisation

Yesterday was a day when I didn’t feel like writing so I found a little bit of my book and put it here. It was fortunate that it was Friday so that it could seamlessly become Fiction Friday but I think I’d have done it regardless. J, who has had a nasty cough, decided to sleep on the sofa and for some reason, this really upset me. It was absolutely the right decision, I don’t sleep well anyway (nearly seven months pregnant) and he needed to sleep practically sitting up on his back, resulting in flat shaking snores. But I had a little cry as I laid in our big, empty bed and started thinking.

 

My brother was profoundly handicapped so I have a fairly strong sense of perspective when it comes to disability. I am well used to being stared at when out as a family, even as a very little girl, I am used to questions and I’m used to the glares when your non verbal sibling wants to make himself heard. So when our daughter was diagnosed with plagiocephaly, I was fairly blase that she was going to be OK. It wasn’t life threatening, it wasn’t going to require surgery once we had ruled out craniosynostosis and though it caused its fair share of angst, we dealt with it and Isla is a perfectly healthy three and a half year old.

This week, I took her to the eye clinic. This has been a six monthly appointment since the plagiocephaly diagnosis and she has always been a little long sighted. Last October, however, her prescription changed from borderline to needing a fairly strong prescription. I disagreed with this and requested a change of hospital, this was granted and this week was the follow up. To cut a very long story short, the prescription must stand for the next 8-10 weeks while we wait to see if she responds to the glasses.

She hates the glasses. Loves the idea of them, loves waving them in Grace’s face as Grace is desperate to have some of her own, but hates wearing them as SHE CAN’T SEE. We will persevere. But that’s not really the point. The point is advocacy. I am her advocate, I know her better than anyone else in the world does and I know what is in her best interest, will always do what is in her best interest. And this feels profoundly wrong to me. I have decided, I think, that if she is not retested as a matter of urgency when we see the orthoptist again, then I will do something. Insist on being moved to a different healthcare trust, see a consultant, I don’t know yet what the options might be, but I will advocate for my three year old who can’t advocate for herself.

The eyesight thing is likely a direct link to her plagio diagnosis, a medical condition that she was born with and went unnoticed until I noticed it and did something about it. It led to torticollis in her neck, eyesight issues and the fact that, even today, her grandmother said that the glasses didn’t fit her. They do, but her ears are ever so slightly asymmetrical and glasses bring this into sharp focus.

I said to J today that we need to accept that our daughter, though perfectly healthy, has health issues. Not major ones, not by any means, but she has not sailed through three and a half years like her sister has. We need to acknowledge this and come to terms with it. Or at least I do. Realise that we have had it tough. Not as tough as some, but tougher than many.

However, she went to the dentist yesterday and her teeth are perfect….

The Difference

Isla, our eldest twin, has/had plagiocephaly. It is commonly known, though it is not at all commonly known, as flat head syndrome. She was born with it, it is fairly common in twins, she was engaged at 32 weeks, her head wedged into my pelvis, her soft head just slowly going from round to well, another shape entirely. Nobody noticed, it was noted with amusement when we had scans, that Twin 1, as she was known, had her sister sitting on top of her, but now, though I place no blame, I don’t find it funny at all.

I noticed it at around 11 weeks old. I was slowly emerging from the twin fog and it was apparent that she looked different to Grace. I made a doctors appointment and was dismissed largely, it took going back again to secure a referral to a consultant at Bexhill Hospital. I don’t remember the time line exactly, it isn’t necessary to know but I am angry most at the complete lack of information. No midwife brought it up as a possibility, no health visitor checked either of the girls at any of the checks before being discharged from their service. Doctors didn’t know, and frankly still don’t, I have had to explain it several times to several GP’s and most recently, to eye specialists as we negotiate potential glasses for Isla.

I researched obsessively, of course I did, I do with everything, it’s both a blessing and a curse and J despairs of me. Just last night, I was googling why our in-utero baby had stopped moving as much. She’s tired, he said, just sleeping, and she was, waking up and flip flopping for an hour at 5am this morning. But anyway, in this case, it was needed and when I insisted on a further referral to a specialist after two fruitless visits to Bexhill, I got what we needed. I was told over and over that heads were rarely round, J’s head was felt and declared slightly asymmetrical and we were supposed to accept this. Yet, her eyes were in different places! One side of her little face protruded further than the other. My big girl. My baby.

We went to Great Ormond Street and we were listened to. We were acknowledged and validated and it felt good. It did not feel good to give your less than a year old an MRI scan, or go into a studio and have your baby photographed for progress checks like a science experiment. But it felt good to have a diagnosis and an action plan. We took her to see a wonderful osteopath who sorted out her misaligned neck, within two sessions, her face looked straighter, we had pillows that she slept on in her cot and different ones for the buggy, both designed to make sure that she didn’t gravitate to the more comfortable flat side. We changed her nappy so that she had to lay on the round side to see the TV or whatever book we were showing her. I don’t remember all of the details now, it is only very recently that J has stopped putting on her bedtime nappy with her head facing the ‘good’ way.

We went to a private clinic to ask about a helmet. This is a hugely controversial subject within the plagio community and I will only touch on what I think. If the plagio is mild and you catch it early then helmet your child. If your child, as ours had, has been seen at a world leading Children’s Hospital and has a diagnosis and a prognosis that her head will never be totally round, then don’t. I view Isla’s condition as a medical one, not something to be sorted by throwing money at it. It divided us, that helmet, J and me. He was for it and I wasn’t, for months afterwards he would ask if we had made the right decision and I would cry, as I did in the car the day we saw that no good, money grabbing salesman. Sorry, I’m sure that there are some good eggs out there, genuinely wanting to help babies get better but this man does not fall into that category.

Her plagio has led to eyesight problems, we think, though that could be coincidental. We know that Isla needs glasses, we are just waiting for a prescription. But most importantly, it has led to her looking different to her identical twin sister. Not in a bad way, I like it, in fact, that they look slightly different. You probably wouldn’t be able to tell, on first meeting them, no one can, but they do look different. Grace has a rounder face than Isla and Isla is a little more angular. You no longer see wonkiness, I can now put her hair in bunches or french plaits and they will fall evenly on both sides, she can now wear sunglasses as her ears are in the same place on both sides of her head.

She will never know anything more than what we choose to tell her. We will use medical terminology and tell her how brave she was, her big trips to London by herself while Gracie stayed at home.

A dent in a tennis ball is bigger than a dent in a football.

That is the plagio mantra, that her head may well be as wonky as it ever was when she was three months old but it won’t look like that. I repeated it over and over to people who asked why we weren’t helmetting her, what we were doing in osteopath appointments and with a physio. I believed that it would be OK in the end.

And it was.