The phone call came on a stormy afternoon. It was dark outside, a proper winter’s day, but cosy enough in my kitchen. Baby Martha was lolling in her bouncy chair and I was cooking dinner for the family.
I had felt better since coming home. After three days in the hospital it was apparent that the blood test results might not arrive for a while yet, and my c-section wound was healing well. Indeed I had virtually forgotten I had had surgery; Martha’s possible diagnosis consumed all my capacity for concern.
We pretended so hard that everything was normal that I almost convinced myself. Martha breastfed regularly, slept and produced dirty nappies like any other baby. Maybe her facial features were a little on the small side, the back of her head a bit flat perhaps, but in every other way she seemed just fine. My busy life of mothering filled my days and home felt safe and ordinary. By the time the phone call came I was certain the doctors had got it wrong.
‘Hello. This is Dr Shah from the hospital. Is that Mrs Lawrence?’
‘Yes. It’s me.’
He is going to tell me it was all a mistake. We can celebrate this evening. I’ll send Adrian out for champagne.
‘Mrs Lawrence, I’m sorry but the FISH test results have come back positive for Down Syndrome. I’m afraid your baby does have Down Syndrome.’
‘Are you sure? No. I don’t think so. I think that must be wrong. You see, she looks so normal.’
‘I’m sorry Mrs Lawrence, but there is no mistake. We will get the full chromosome results in another week or two. But this test is certain. I’m sorry.’
I felt angry with Dr Shah. How dare he tell me such a thing and spoil my perfect baby? How dare he bring me this bad news? But even while a large part of my brain remained firmly in denial, I knew that, outwardly at least, we were going to have to acknowledge this news as true. We would have to start telling people Martha had Down Syndrome.
We began with our own children. We gathered them in the kitchen that evening, and Adrian told them their sister had a medical condition. As our children ranged in age from seventeen down to three it was difficult to get it right for all of them. We stressed that Martha wasn’t actually unwell, although we were still waiting for some more tests on her heart. It would probably be more difficult for her to learn things. She might take longer than other babies to walk and talk. She was unlikely to do A levels or go to University.
Some of the older ones commented later that they had trouble calibrating the seriousness of what we told them. On the one hand we had presented this as a big family announcement, and we were clearly upset. Indeed Matilda, the eldest, said she had already known that there was something wrong from all the murmured conversations behind closed doors, and our anxious faces. But then the symptoms we had described sounded pretty trivial. Was it all a big fuss about nothing then? I think I was experiencing some of the same difficulties myself. How could this contented and healthy-looking baby have such a huge shadow hanging over her future?
Adrian bought books: his go-to approach for all life’s problems. For the younger children we purchased story books with pictures of happy families playing with their Down Syndrome siblings. For ourselves we ordered a selection of informative books for parents, travel guides to the new territory in which we so unwillingly found ourselves. I used to sit breastfeeding Martha in the rocking chair with one of these books in my hand, educating myself about poor muscle tone, developmental milestones and the importance of early intervention.
I found I could only tolerate a chapter or so at a time of these books before the avalanche of information reduced me to tears. One of the difficulties of parenting a child with Downs, especially in the early weeks and months, is the vast uncertainty about how your baby might turn out.
The list of possible problems associated with Down Syndrome is long and terrifying. Your baby might have feeding problems, serious heart defects, respiratory illness, poor vision, hearing loss, thyroid deficiencies, spinal instability, missing teeth, seizures or leukemia. Or she might have only a few or none of these health challenges. As she grows her physical and intellectual development will certainly be delayed, but this could turn out to be anything from fairly minor impairment to profound and devastating disability. As she ages she may succumb to early-onset dementia. Or she may continue to live a full and active life until the age of sixty or beyond. Looking at the tiny baby in my arms, there was really no way of knowing. Yes I had a diagnosis telling me she had an extra chromosome, but in many ways I was little the wiser as to how that third chromosome 21 would affect her life. Or mine.
All the books were agreed that educational and therapeutic interventions were essential, and from as early an age as possible. I have a responsible, proactive personality. When electronic ‘pets’ first came on the market, one of my children acquired this little gadget called a Tamagotchi that beeped for frequent attention. I used to interrupt my day to ‘feed’ and ‘exercise’ this pixilated thing while its owner was at school because I couldn’t bear to think of it falling ill or dying from neglect. That’s the kind of mother I am! So all the exhortations to stimulate and educate my impaired baby fell on hypervigilant ears. I was not going to make this easy for myself.
I contacted the Down’s Syndrome Association (DSA)* as well as a local Downs support group**. I felt sure there was something, probably lots of things, I should be doing, and I wanted someone to tell me what they were. I must have sounded on the phone as if I had my act together, because I remember the woman from the DSA saying to me,
‘You sound as if you’re coping well. But it’s ok not be be ok, you know? It’s still very early days.’
‘I feel fine at the moment’, I told her. That was true, but half an hour later I was crying again.
The local support group sent me some back copies of their newsletter. These were full of black and white photos of older children and teenagers with Down Syndrome. They all looked happy, and I’m sure their parents thought they looked adorable, but in my heart I was horrified to think my baby might grow up to look like that. Flat-faced, heavy-built, squat, obviously mentally disabled – surely no one looking like that could ever be part of my perfect family? I felt ashamed to have these thoughts. Surely now I was a Down Syndrome parent myself I shouldn’t feel such prejudice? But it was rooted deep inside me, in a dark place I had never had to venture before.
*The UK Down’s Syndrome Association is a wonderful organisation which does great work to support people with Down Syndrome and their families. You can learn much more about all aspects of Down Syndrome at their website:
**My local support group in Essex is called Down Syndrome Extra 21. They are a marvellous and friendly group of parents who organise a wide range of social and informational events to support families and people with DS. Their website is:
Karen Lawrence is an author and mother of seven living in Billericay, Essex, United Kingdom. Letting the Light In is Karen’s personal account of having a baby with Down Syndrome. It will be published in book form in the autumn of 2021. You can read more of this story and more of Karen’s other writing at her website, https://karenlawrenceauthor.com
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Karen’s first book, Finding Your Calm Space: Thirty-One Ways to find Calm in a Crazy World is available from Amazon at https://www.amazon.co.uk/Finding-Your-Calm-Space-Thirty-One-ebook/dp/B08NZ1W9QY/ref=sr_1_3?dchild=1&keywords=finding+your+calm+space&qid=1606147885&s=books&sr=1-3