A Preemie So Small Down Syndrome Wasn’t Diagnosed
We’ve all heard of miracle babies, ones that defy all odds. Babies who are born so early that their life hangs in the balance hourly. Here is the story of one such babe, one who was a Preemie so small that Down syndrome was not diagnosed at first…
I never, ever thought it would be me. I thought it was my God-given right to give birth to a perfect baby with no medical complications, have him or her handed to me in the delivery room after going full term and then be able to take my baby home. Wrong on all three counts.
Theo’s undetected Down Syndrome would have killed him if it hadn’t been picked up literally in the nick of time. A standard appointment had alerted my midwife to a small bump and ultimately a baby who was on the verge of surviving inside me, unknown to all of us. Theo is a fighter, a survivor – I think we can all attest to our children being pretty amazing with the set of cards they are born with. We ponder over these unfamiliar cards, worry, perhaps glance at them too much where our mini humans cast them to one side and just get on with it. But my baby was days, if not hours away, from being brain-damaged or still born due to a limited flow in the umbilical cord.
Theo was born the size of a mobile phone with spindly legs and arms at 29 weeks. No one knew about his diagnosis then: he was just a preemie baby. When I say just, all of the NICU experience, with its bleeps, wires and tubes was ENOUGH for any mum. I should have still been pregnant, enjoying my swelling baby, getting everything ready. Instead, I faced a grueling reality of a vulnerable baby surviving day to day. Theo was too preemature for any doctor to detect Down Syndrome and he was lucky enough not to be born with a heart defect so three weeks went by whilst we all thought we had merely months to face any seriousness. Anything different.
One morning I was asked whether my partner, Andy, was coming in that day. No, I said he was at work. Well, I had better get him in as they had some ‘life-changing’ news to tell us about Theo which had come back from a blood test. That was the moment my life shifted its course for good. Never before had I felt the reins ripped out of my hands, slapped across my face then tugged into darkness. An hour later, with Andy by my side, we learned what Trisomy 21 meant.
The thing we all get tested for because nobody wants that, right? I was terrified of it. If it was such a concern for the NHS, where we are all recommended to get the test for this undesirable outcome, why would I not be in utter, utter despair that, yes, that is what my son was born with. That is why he had stopped growing inside, that is why he is there in an incubator. In fact, he was lucky to be there at all. I may have aborted my baby if I had known about his DS in utero. I don’t know: I was never in that situation. But if I had, I would have done this through fear, ignorance and outdated perceptions. My life has changed: it has so much more in it. Yes, that might be some unwanted challenges but my life has my darling son in it and for that I am forever grateful. I am now in a community that I never knew existed and it is so inspiring and positive. I have a sensitivity and a patience I never had before
I didn’t want him to have it, I didn’t want my precious newborn to have to deal with it, I didn’t want a special needs adult in my life in 20 years, I didn’t want to face something I didn’t know and had rarely seen. In fact, I had never ever met anyone with DS. (Now, I think that is part of the problem for expectant mothers – the lack of awareness, the lack of the pure, simple reality of living with DS which is why blogs like these are so important). I was devastated which I am sure was compounded by the stress – stress on another level – of having a preemie baby. My early weeks of taking that diagnosis in (which I am sure we can all remember as we see our new reality shift and morph in our hands) was spent with Theo in NICU which I think made it harder. I had to ask permission to hold him, have him handed to me and go through the anxiety every morning of the doctors’ rounds, thinking what else are you going to discover next?
NICU + a DS diagnosis = the worst time of my life. When it should have been the best. I felt utterly cheated and lost.
My initial fears – oh, they are still there but if only my present self and Theo, of course, could take my hand back then and lead me to a window where I could see the many, many hours of blissful motherhood, of discovering Theo and him discovering me. Of making each other laugh and of the endless cuddles. If only I could bottle those moments when my heart is full of a love I never knew could be present in a person. When we are faced with a diagnosis – that’s all we can see. It is hard to look beyond at what is simply in front of us: our baby. New life. New beginnings and the blessed opportunity to nurture a person in this world. I have of course fallen in love with my happy go lucky son, with every atom of his being.But at 17 months corrected where I am now definitely seeing a yawning delay, I do battle with my fear of his future. There’s a certain take-it-for-grantedness that I think I may have had if I had a typical child. I see it in other parents: yes, of course he or she is pointing. Walking? Oh, I can’t stop him/her. I would die to see Theo do that so easily. I know it will come but it breaks my heart a little that these things, and many, many more after them will come harder to my son. I do wish I could change that. Andy and I fear about his independence and whether he will find what we have. We met at a party in Amsterdam: standard. But our standard is not going to be Theo’s standard. That’s the bit I struggle with and will always, I suspect.
As for us as parents and partners, we are stronger – there is no doubt of that – but we know we will have challenges. Right now, we are loving being parents of a delightful, little boy. We are cutting our parenting teeth on Theo as he is shaping us into the parents we are as much as we are shaping him. In fact, he is pathing the way for his future siblings and they will (hopefully) be grateful to him as he has made us utterly grateful and, unbelievably, pretty chillled out. Theo is such an easy, little boy.
Andy is 13 years younger than me. I gave birth at 39 when Andy was 26. I think it was difficult for me to accept that it was my older eggs that had resulted in Theo’s diagnosis. Andy did not think like that all. He cried, of course. I always wondered if he felt trapped with an older woman and now a disabled baby but he never showed it. We were in this together and he displayed an emotional maturity of the like I could not have mustered at 26! We were shocked and we were very, very sad. I think feeling the weight of the diagnosis together tested our relationship, which was only a year and a half old at the time. But he is very practical and just got on with it. ‘We have each other’ I remember him saying. I remember thinking ‘but this is going to change things for us, it is going to be difficult, it won’t be what we wanted’. I wrangled over it – I still do – he put one foot in front of the other and took it day by day. To be fair, it is me who does a good deal of the child care and the hospital appointments – goodness, there are so many – where I sit, clenching everything with the fear of something else going wrong. But Andy is simply Daddy.
He doesn’t weep over the 15 year-old Theo we haven’t met yet. The young adult who I am frightened will be bullied , will be excluded from parties as he’s the special needs kid, the boy who might very well turn round and ask why him. Likewise, he doesn’t mull over the past or think about those early months. He is just here in the present. I asked him the other day if he could take Theo’s DS away from him, would he? He said he wouldn’t and I sighed a relief. Theo would not be Theo and his little burgeoning soul fills our lives with light.
Theo is 17 months corrected and a happy resident of North London. He attends nursery four days a week where he has becoming quite the artistClaire, Theo’s mum, is a trained actress and presenter and intends to use her skills in communication and public speaking to raise awareness of Down Syndrome and the joy Theo has brought to her and her partner’s lives. Follow along on Instagram @mumonadifferentpath
Wow, what a journey you’ve all made in such a short time! Theo looks so healthy and strong despite being born so tiny and frail. Congratulations on your son and on your new, unexpectedly blessed life.
I think Theo looks so strong and healthy too, and to think he was soooo tiny at birth!
I’ve loved watching Theo on IG. Now this is so sweet to ready his incredible story! He is such a strong little guy. An inspiration for sure.