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Eating, Walking and Talking

The majority of children with full Edwards syndrome are fed via a nasogastric (nose) or gastrostomy (tummy) tube. For some this is because they have an unsafe swallow. For others their heart conditions have meant that they didn’t have enough energy to self feed. For others there just doesn’t seem to be a drive to eat. Cali takes all her food via her gastrostomy. We give her a blended diet, which means she has normal food blended to smithereens which is then pushed into her tummy via a syringe. When Cali is feeling good and healthy she will take some food by mouth. There is no medical reason why she can’t eat with her mouth that I am aware of, but I think lack of practise, a lot of illness and, yes, our lack of capacity to keep offering, have combined to make it unlikely Cali will ever eat orally. But in good periods I do try and offer, and when a syringe is put in her hand, if she feels hungry, she will pull it towards her mouth for me to pipe food in for her (health and safety alert: This method is definitely not recommended by professionals!). There ARE children with full Edwards and Patau who take all their nutrition by mouth. I think a lot depends on what else is going on with the child and the capacity of the family to keep trying. If you do have a new born with Edwards or Patau ask for a swallow test before you try feeding orally, not all babies have a safe swallow.

I don’t imagine that Cali is going to walk, or at least not anytime soon. At the moment she’s very interested in standing, but mainly ignores all the other developmental steps, if you pardon the pun, that precede it, she just wants to be held up so she can meet you at eye level and enjoy the feeling of being upright. She has good head control and the strength to stand, just not the skill to balance. She’s not interested in getting moving, nor is she interested in sitting unaided. She goes through phases of working on her rolling skills as if she might be thinking about crawling, and she’s almost onto her tummy, bar an arm that she just hasn’t figured out how to move out of the way. But it never feels like she’s seriously determined, rather that she’s just delighted to have found something different to do. She does, however, have an effective squirm, and she travels round her patch imperceptibly but with precision. We once watched her wiggle herself into a position that enabled her to kick over her newly sitting little sister. We wouldn’t have believed it if we hadn’t seen it. But sitting with little support is definitely possible for many children with full Edwards, and I believe as some of the children I know get older there will be more that can stand and maybe take some steps. Nobody really knows what these children are capable of, though some experts believe they do - I have read in a medical journal no less that children with Edwards will never even roll onto their side. Don’t believe everything you read about Edwards syndrome. Apart from this of course.  

I doubt Cali will talk. She has a massive range of noises which communicate her moods perfectly to us, and she loves it when her noises are parroted back to her. But none of her noises seem like they are heading towards the production of words. There are lots of ways to communicate however and she’s already pretty adept at pressing a big “button” to turn on a bubble tube or play a pre-recorded message and she has started using eye gaze technology at pre-school. It will be interesting to see how far she can go with these tools. The truth is I’ve no idea how much she understands, we’re not even sure how well she can hear. One time on a car journey Cali kept making this dreadful retching noise, I wasn’t able to help her so in my frustration I snapped at her “stop doing that Cali or I’ll suction your mouth!” (this being a thing she hates – and no I’m not proud of this piece of parenting), and I swear she looked at me and stopped retching immediately. Other times I’m lucky if she’ll turn her head in response to her name.
Cali, lovely Cali

I’ve gotten used to the fact that Cali’s physical abilities are very limited, and that progress is slow (but oh! the happiness and amazement when she does something new! “LOOK! She’s picking that up with TWO HANDS!”). Like with any other child it’s not what they can do that’s important, it’s who they are and how much they can enjoy life. I’ve heard of parents being told their child with Edwards will be practically a vegetable, and I’ve also heard a lot about the poor quality of life children with Edwards will have. I can confidently say there is nothing vegetably about my girl. Nor does Cali, or any of the other children with Edwards I have met, have a poor quality of life. I would say the opposite is true; our children seem capable of having a great time.
As long as Cali is fairly well she is a happy child. She nearly always grins and makes delighted noises when she sees me and is very easy to make laugh. She can spend a long time engrossed with her toys or watching lights projected onto the ceiling with no apparent boredom. She’s always enjoyed being held but now she reciprocates affection, snuggling in tight and grabbing your clothes to stop you from putting her down. And she’s also able to clearly communicate “no” when she doesn’t like something. She doesn’t have much autonomy but when she can exert it she does. She understands when I motion for her hand but often deliberately withholds it, smirking to herself at her own rebellion. In four years she’s rarely been frustrated and has shown no signs of aggression or ego at all. No toddler tantrums, no lashing out. Were it not for the medical and feeding issues she would be a pretty easy child to look after.

Cali has certainly suffered a lot more physical pain and discomfort than most children. She has had several admissions into hospital with respiratory illness which have been accompanied by painful cannula placements and invasive oxygen support, she’s been through a variety of small surgical procedures, she has to tolerate her cack handed parents regularly passing a tube into her nose to help with her sleep apnoea and she suffered urine infections which nobody noticed for three years of her life. None of this has stopped her from enjoying life and she’s always seemed to bounce back quickly. I also think that Cali has missed out, and will continue to avoid, a lot of the difficult emotions most other children go through as they have to learn that they are not the centre of the universe and that life can be sad and well as happy. Cali lives in the here and now, she feels emotions but I don’t think she dwells on them.

And although at nearly 4 her developmental milestones are few, I feel this is no measurement of her intelligence. There is something incredibly sentient about Cali’s eye contact, something very knowing about her delicate touches. I never feel with Cali like I am in the presence of somebody with less intelligence than myself, on the contrary I feel she knows about all the things I’ve been striving to understand; about letting go of pain when it is over, about being at peace, about living in the present moment and seeing joy and fun in the world. Cali is incredibly special, and so are all the children with T13/18 that I have met. 
If anything I have written here is of any use to anybody who has a child with Edwards syndrome in their life, personally or professionally, I would be delighted. I realise every experience with Edwards and Patau is different and I offer my own experience as one way the diagnosis can turn out. I feel it’s important that the world knows that there is much more to children with Edwards and Patau than low down ears and extra digits.

Jay x
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thanks for the insight

Hiya Jay I'm a Student LD Nurse researching Patau Syndrome, I came across your blog and just wanted to say thanks for your personal insight. It was a real pleasure reading about your family life and I hope all of you remain well x

24 September 2018

Marizete Roncete

Mother T18

I have a daughter with full t18. She is 23th walk and take all her food by month and eating by Herself. I have lived in Brasil but now I am in London with my other Daugther.

31 May 2019

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