Trisomy Blog Part 4 Living with Cali



Beyond Rocker Bottom Feet and Extra Digits

Recently there have been a lot of new people joining the Trisomy 13/18 Facebook group that I am a member of (Trisomy 18&13 Families UK). Many of them have just learnt that they are carrying a child with Edwards or Patau syndrome and are in an anguished and shocked state about what to do. They have the information we’re all so familiar with; their baby is unlikely to survive until term, or likely to die during childbirth or soon afterward, with an estimated 1 in 10 seeing their first birthday. Termination will have been discussed, and may even have been presented as the "best option".

These parents will often then read some of the information available online, and perhaps feel disturbed by the ways in which children with T13/18 are described, they learn their baby may have “a small abnormally shaped head, low down ears, long fingers, additional digits, a cleft palate and/or smooth feet with rounded soles" (all phrases taken from current NHS descriptions). They will also have been exposed to the long list of congenital abnormalities and health conditions their child could have, and have learnt that their child will have severe learning difficulties.
And then they have discovered our group. They will see that as well as the many children whose lives were short, there is also a group of children and young adults that are living happy lives with full, partial and mosaic Trisomy 13 and 18. I imagine that seeing these children must bring more complex emotions, as alongside despair there might also suddenly be hope. And fear, because choosing to have a child as complex as ours can be, is not an easy undertaking.

Deciding whether to continue with a pregnancy is one of the hardest decisions I can imagine making. I’ve often wondered what we would have done if we’d known before birth that Cali had Edwards’ Syndrome. Trying to put myself in that position, I realised how little information there is out there which I would have found useful. Until I found other parenBaby Calits on Facebook, everything I read after Cali was born just kept reiterating the same things; the problems and the mortality rate. So, in this blog I’m going to attempt to write something I might have found useful in those early days, when I didn’t understand what having a child with Edwards Syndrome meant. My own version of “What to expect when expecting….”.


I’ve wrestled with myself trying to write this. On bad days I’ve just wanted to tell people of the huge hardships that looking after Cali has bought me and how difficult, mundane, lonely and limiting I often find all. But on good days I feel the opposite; that being Cali’s mum has given me a particularly poignant kind of joy and love that feels like a secret gift bestowed upon me, that parents of “normal” children just don’t get in the same way. I also feel that the experiences we’ve been through have changed me for the better; I don’t worry about the things I used to worry about, I feel more empathetic of other people and I feel more mature than I did. The truth, of course, is that both these things are true, for me looking after a child with Edwards has bought the best and the worst.


The very early days

Although there was much about our early days with Cali that was wildly different from most other parents’ first months with a new baby; overwhelming grief, numerous medical appointments, short breaks in the children’s hospice, domestic accidents caused by tripping over medical equipment….it was also during Cali’s earliest days that it was easiest to feel she was not so different from any other baby. She slept a lot. She was held a lot. She cried every evening for hours for what seemed like months and we didn't know why. She created awe inspiring mustard coloured poos.

Much of what the friends I’d made during pregnancy were saying about their new babies I could relate to. They too were anxious, didn’t have a clue what they were doing, were terrified of getting it wrong and often checked their sleeping baby was still breathing. We were the same, only it was vastly amplified, there was a lot more to learn, nobody to compare notes with and our baby was expected to stop breathing, so she wore an apnoea probe stuck to her tummy for the first year.

Parents expecting a child with Edwards Syndrome sometimes ask if their baby will be able to breastfeed. Whilst I haven’t heard of any that solely breastfed, I know that some can manage to suckle, even if they also need tube feeding as well. Cali could latch on and coordinate herself to suck and swallow for short periods. However, she also had a small mouth, a high palate and muted instincts, as well as being very sleepy. So feeding was very challenging. I found that nipple shields created a shape she could latch onto, but it was hard to find a quiet time when Cali was awake and hungry to dress my nipples up and try and figure out how to help her get latched on. It soon became something I found so stressful that it became a self-fulfilling fail. Having breastfed a baby since, I often feel if Cali had been my second baby we might have advanced further, I’d have known better what to do. And I feel sad that we both missed out on what could have been such a comfort for both of us. Instead I expressed milk for Cali, this helped me feel like I was able to give her something nobody else could, and pass on my immune system. For 16 months I pumped in hospitals, carparks, at funerals (not during the actual services I hasten to add) and once in a broom cupboard at a wedding.

So, for the first little while Cali didn’t seem so very different to other babies, tubes and apnoea probes aside. And then slowly the other babies I knew that were born at the same time started to accelerate away from her in their abilities, and the differences became increasingly obvious. I felt very downhearted when I realised the other babies were smiling, but after a while I got so used to Cali’s range of solemn, wise and nonchalant expressions that when she suddenly broke into a gummy grin at three months it was a huge and welcome surprise. Since that first smile Cali has been a very smiley, sunny child. Learning to laugh took longer, but by ten months or so she’d chuckle when she was tickled. At four years old she now laughs to herself when something strikes her as funny or if we do something that amuses her. She has a keen sense of humour which, I think, is one of many signs of intelligence within her.

The developmental pace of a baby with Edwards is incredibly slow. At four years old Cali’s physical abilities are like that of a baby of a few months of age, though her emotional intelligence doesn’t feel so young to me. And I don’t think she’s following the normal developmental pathway only super slowly, she seems to work on a skill that interest her, while ignoring the skills that normally precede it. What I would say is that she is definitely developing all the time and new skills emerge regularly. I’d say there’s nothing static about the developmental abilities of Edwards children, they’re just slow.


Jay x

 

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Date Added

16/07/2018



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