“A newly-made dad emerges into a crowded waiting room with his baby wrapped in a pink or blue towel in his arms.
Everyone stands up excitedly as he proudly announces the sex, weight, and name and says, ‘Mother and baby are doing well.’ There are hugs, happy tears, and pats on the back. There’s nothing but joy and celebration in the movies.
Well, our reality was nothing like the movies. Mother didn’t know how she was doing. Baby… we had no idea what his situation was either. The baby in our arms wasn’t the baby we were expecting. The baby in our arms, we had just been told, was very likely to have Down syndrome.
This whole story starts 13 years before in 2007 when two spotty teenagers took a fancy to each other while playing covers (poorly) in my parents’ garage in what we thought was a very promising rock band. I was the singer, Peter played bass, and he asked me to be his girlfriend on the now-extinct platform of MSN. We shared our first kiss in English Room 6 in school the next day, after which I said, ‘Well, that was weird!’ and for some reason, he decided to stick around.
Fast forward to June 2019, I was staring in disbelief at two pink lines in the bathroom of our little green cottage, knowing I was about to make my now husband a dad. We had been using the Natural Cycles app and fully knew the consequences of what getting down to business on a red day could be… but really? One time? While we were shocked, we were so excited to be starting our journey toward becoming a family of three.
Courtesy of Sara McNeill
I had an amazing, sickness free pregnancy and loved feeling ‘special’ as I cooked up a baby in my belly. There were a few little bumps in the road that ended up coming to nothing. At one scan, one kidney was carrying extra fluid but later sorted itself out. At another, the blood flow through the umbilical cord was giving unusual readings but again, resolved itself. We spent a baby-moon in Krakow, stayed with friends in Hamburg, I let my hair down at two Hen parties in Belfast and Edinburgh, and then eventually enjoyed my brother’s wedding in December – the last big event before the arrival of Baby McNeill.
Friday, February 7, was supposed to be my last day of work, at which point I would be 37 weeks plus 2 days. However, at an antenatal appointment on Thursday, our consultant noted a drastic decrease in the amount of amniotic fluid surrounding the baby and poor blood flow through the umbilical cord. It was decided I would, in fact, not be working the next day. I would be having a planned cesarean section instead.
It was surreal saying goodbye to Peter at the doors to the theatre that day, knowing the next time we would see each other, we would be about to become parents. There were lots of people in the room, gowned and ready for action, and me… I was having a ball. We figured out one of the assistants used to milk cows at my dad’s cousin’s farm. While we were waiting for the spinal to kick in, I was telling the anesthetist about how I had to put my finger up a rubber bum for an exam at university… and I’m a dentist. At this point, Peter appeared in scrubs at the side of my head and said, ‘I think I’ve come at a bad time.’ It was just all very funny.
That’s when things started to get exciting. After a few minutes of rummaging around, our consultant said, ‘Would you like to see this baby being born?’ She dropped the blue screen and there he was. Crying aloud for all to hear even before he was fully out. ‘Aw Sara, he’s got a head of hair.’
‘Peter, does he look like a Tom??’ He was weighed, initial tests done, wrapped up, and handed to Dad. Our baby was here, he was beautiful and for a little while, we were just our new little family, and everything was perfectly normal.
Courtesy of Sara McNeill
We were moved to a recovery area when our obstetric consultant pulled up a chair to the left of my bed. Tom was in my arms wrapped up in his little, scratchy blue and white hospital towel and Peter was standing to my right. The mood shifted. ‘Do you have any concerns about this baby?’
We had gotten to know her quite well over the last few months of the pregnancy. I was naturally surprised by this question and as she said it, I was struggling to read her face. I was half expecting her to say, ‘I’m a bit concerned he’s far too good looking!’ and then we’d all have a good laugh.
But the punchline never came. I didn’t really know what to say, so there was just a long pause. She maintained eye contact the whole time. ‘Well… I do have concerns about this baby.’ Another pause. ‘He’s… showing some markers for Down syndrome.’
She waited. And looked. After a moment I heard myself say in a quiet little voice, ‘Do you think it’s likely?’ She did that little smile where your bottom lip rolls up over your teeth into your top lip and nodded. ‘I do.’
I didn’t even look at Peter. He later told me he felt his legs go a bit weak at this point and steadied himself on the chair beside him. It all happened very slowly. I looked down at this little person I was holding and back to her. Again this little voice, trying not to cry this time came out, ‘Okay.’
She talked us through what would happen next. A pediatrician would come to do some initial tests and take a blood sample to confirm the diagnosis. As it was Friday, we wouldn’t get the results until Monday. Stunned and numb, I handed over my brand new baby to a strange man who wheeled him away to another room for what felt like a very long time. We were left to our own devices for a while. Someone brought us stale toast and a weak cup of tea. We didn’t say much. In 12 years, I thought I had seen every emotion on my husband’s face, but I had never seen this look before. It was hurt. It was fear. Peter even says himself it was probably a little heartbreak too.
In that moment, even though my baby was less than an hour old, I had pressed fast forward 10 years. We were now the family that the special bus came to in the mornings. Truth be told, the ones I used to pass on my way into school and felt sorry for. This was my precious baby and I loved him but I was scared.
I was scared because we knew so little. I was scared because he might have heart issues. Because he might be deaf. Because they said he would need a chest x-ray with a tube down his throat to confirm his esophagus was attached to his stomach. I was scared because… I didn’t want to be the family that people felt sorry for.
Courtesy of Sara McNeill
I feel like medical professionals have a huge role to play in shaping how parents feel about their new baby in moments like these. I will be forever thankful to our consultant for starting us on a positive journey with Down syndrome that day. When Tom was brought back to us after the tests, she appeared by our bed again. She didn’t say she was sorry. She took Tom into her own arms and told us how beautiful he was. ‘It’s not an I’m sorry. It’s just different.’ As my husband’s legs went weak and my stomach dropped, she helped us to see even with this surprise diagnosis, he was still the same beautiful baby we were elated with a mere 30 minutes before.
We were kept in hospital for 5 days, which now sounds like nothing but at the time, felt like a long haul. I saw more moms come and go in those 5 days than I can count. Every time I saw that proud dad carrying the car seat leaving the ward, if I’m really honest with myself, I felt a bit of jealousy. ‘Look at them, getting home. Look at them getting home with their baby that doesn’t have Down syndrome. They don’t know how lucky they are,’ I thought.
I wasn’t robbed of the joy of a newborn. I loved Tom. I loved him so much I couldn’t wait for an excuse to hold him, especially as he had to spend a few days couped up in ‘The Baby Sunbed’ to try and dispel the yellow glow of jaundice he happened to have. But nights alone with a baby can be very long. When the visitors had left, when Peter had gone home, and when I was left alone with my own thoughts, I did have a few ‘why me’ moments.
When you’re pregnant, you just assume everything will be, for want of a better word, normal. I thought having a child with Down syndrome was something that happened to other families… not ours. There is an assumption that only older women have babies with Down syndrome, not a young woman of 27 like myself.
That day in February, I could never have imagined what 2020 would have in store for us. Never mind Down syndrome, I’m talking about the worldwide pandemic of COVID-19. The invisible killer we knew so little about that I was sure my parents would die from, and potentially my new baby too, as he was especially vulnerable with having a hole in his heart. Tom was 6 weeks old when Boris Johnston told the nation we must stay home, putting the UK into lockdown, and effectively stripping us of any normality and support network in these already unusual and unexpected circumstances.
Courtesy of Sara McNeill
But what we really didn’t expect was lockdown would be a blessing in disguise. We got uninterrupted family time in abundance. We didn’t have to ward off elderly relatives determined to kiss the baby or hand him around like a game of pass the parcel. The therapies and hospital appointments, that may have in normal times come in thick and fast, disappeared. It was a time for us to get to know Tom, get into the swing of parenting without interference, and realize, actually, life with a baby with Down syndrome isn’t so different after all.
What scared us initially was the outdated image of Down syndrome that already existed in our heads and the unknown for us as a family. But not all unknowns are scary. We didn’t know he would be so CUTE. That he would light up a room with that big, beaming smile of his. That my heart would break every day at how much and how hard I love him and the daily struggle to not bite a chunk out of those big, chubby thighs because he is just so delicious! Time and time again, I’ve seen people with Down syndrome doing all of the things I was worried Tom may never do. I’ve seen young couples get married, working and living independently, heading to the pub with their mates, and going on ski holidays. I’ve seen more children with DS in advertising campaigns than ever before, not to mention the most liked Gucci Instagram post of all time – go check it out.
Courtesy of Sara McNeill
Tom doesn’t know it yet but I already have him married off to our friend’s daughter, Zara, who’s 6 months older. Some may say I’m an interfering mother-in-law 20 years too early, but Zara will thank me someday for scoring her a handsome boy!
I hated the thought of people feeling sorry for us because we certainly don’t feel sorry for ourselves. Down syndrome isn’t an affliction. That extra chromosome is just a little piece of Tom that adds some extra sparkle. The only thing people with DS ‘suffer’ from is the ignorance of others and so with that in mind, Twenty-One Tom was born, a little blog haven for me to share all the realities of life with our handsome boy, post plenty of pictures, and connect with other families like ours.
Courtesy of Sara McNeill
So many good things have come from the blog in a few short months. We’ve featured in magazines and newspapers. We’ve challenged how language is used around DS. Tom is now a model for a Nursery Store chain here in Northern Ireland, which to me is inclusion at its finest! Expectant parents have reached out to me and new parents who have just received their diagnosis have done the same, saying the positivity that oozes from our page has brought them so much reassurance for the future with their own little babies, who just happen to have Down syndrome. I am insanely proud together Tom, Peter, and I are spreading good vibes about DS and hopefully, carving the way for better attitudes and more opportunities for Tom and others like him in years to come.
10 months ago, among feelings of bewilderment and fear, my mothering instincts kicked in. I knew I was the one who would set the tone for how myself, my family, and others around us would feel about Tom. I got my big girl pants on, I started to use my voice, and I’m still going. I will shout for Tom until he can shout for himself.
Courtesy of Sara McNeill
I wish I could go back and show myself just how amazing that little baby in my arms was going to be. I, hand on heart, wouldn’t change him. Not a single bit of him.
Exactly one week after Tom was born was Valentine’s Day. My first Valentine’s celebrating my wonderful husband as a father and my first as a mother. ‘Tom’ got me a simple little card and it hits me right in the feels every time I think about it. Inside it read, ‘Mummy, thanks for loving me from the very start.’
I sure did, little Tom. Right from the very start.
Emma Rock Photography
This story was submitted to Love What Matters by Sara McNeill from Ahoghill in County Antrim, Northern Ireland. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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