Pauline’s Story- A 1 in 10 Chance of Down Syndrome
The initial early tests for trisomy disorders can cause alarm, and more often than not they cause a family to hold out on the hope that their child will not be the 1 in 10. It can also be something that puts a stumbling block in the road of acceptance as a parent is not fully able to embrace the diagnosis when there is a chance that the baby will be born with the standard chromosomal makeup instead of a little something extra. This is Pauline’s story, a beautiful little girl who had a 1 in 10 chance of Down Syndrome.
We were told our child had a 1 in 10 chance of having Down Syndrome due to physical markers like her nuchal fold. I was told this over the phone by my OB. Over the telephone made it feel a bit distant and not as personal. I also think that some of the messaging or caution is around the health of a baby with DS. The medical community is risk-averse and kids with DS can have complex health issues or not so many. The explanations for having a baby with DS seem very cautionary and can paint a very risky future. My husband and I both knew that with pregnancy–any pregnancy–complications can come up and once your babe is born, the future is still unknown. So it seems a bit harsh to be so cautious about having a baby with Down Syndrome. With all our medical advances, you would think this would be different. I think it’s fine to be realistic and provide a balanced view versus being overly cautious.
I was definitely sad about the type of future my child would encounter. Also, being a first-time Mum, I did not feel confident raising a child with a disability. I was afraid more for selfish reasons about how others would judge me, my child and my family. I had also envisioned a perfect future for my child. The diagnosis changed that and made the future seem more uncertain. It was mainly my own projection of what the future should be, so that it would be convenient and something I could predict and control.
I think most of my fears were around people we knew not being supportive and loving to our child. I’m by nature a very anxious person, so knowing that some babies with Down Syndrome may have complications made me super-paranoid. I also had anxiety from a previous miscarriage, so that baggage came with me, sadly!
We did not tell all our family about our child having Down Syndrome until they met her and then we explained it to them.
We had never really known anyone with Down Syndrome before our daughter was born, there was a girl at our parish, but we did not know the family personally. We were lucky to have watched “Imagine a world without Down Syndrome” back when I was 4 weeks pregnant. At the time, I had no idea our little one had Down Syndrome.
I worried about telling others because I was afraid of another miscarriage, mainly, and the possible health risks for a child with Down Syndrome, which could result in a miscarriage or a stillbirth. I also did not want to tell too many people about it and then have to explain it. We even waited to announce our pregnancy until our 4th or 5th month.
My biggest obstacle to accepting the diagnosis was that I thought maybe the 1% chance of the NIPT test being wrong was a possibility to hold out for. I did not accept the diagnosis. I loved our baby whichever way it turned out, though. For some reason, though, I felt maybe once she was born, against all odds, we would find out our little one would be a typical kid. It’s sad. I think I prayed that her Down Syndrome would be cured. I had a lack of understanding and just my own way of wishing and praying our future would be a different path. It’s strange how even our hearts can pray for the wrong thing and how I was so close-minded to this different path.
As far as health problems, our daughter needed CPAP for 12 hours and went immediately to the 
NICU. I had the flu, so I did not get to hold her until 16 hours after delivery. Once she stopped needing CPAP, she lost 10 ounces of weight and was not latching for breastfeeding. So we stayed until she reliably started bottle feeding. We did that so we could get our little one home sooner. We worked on breastfeeding again after she was gaining weight and becoming a champ at drinking from her bottle.
This was our second pregnancy as we lost our first at 7 weeks. This time around we had complications. I had a flu while giving birth and then had too much amniotic fluid. Our daughter was a breach baby and she had a few heart decelerations in the womb. At 37 weeks, when I went in for a regular OB appointment, I was told I would have to deliver that day. I was hopeful they could manually move our babe from breach position, but they did not want to do it with the risk of the heart decelerations. So we waited for 20 hours for a OR to be open, since we were not an emergency case. At 8pm the following night, she was delivered via C-section.
My husband Pete was more positive when I gave him the news. He was the one who said we get the opportunity to be parents and for him to be a father. It did not matter to him that our child had Down Syndrome.
After going through a miscarriage and then having another high-risk pregnancy, it felt like a lot. Some of it was a challenging time not knowing what to expect. It did bring us together more as a couple, since we had to lean on each other for support–more me relying on him. We try hard to navigate decisions for our daughter together, we share appointments and we try to both be engaged with therapists, doctors, and daycare staff. He has been 100% supportive and sometimes does more than me on a daily basis to take care of our little girl. It’s amazing to see his love for her.
I know this is weird, but I kept saying to myself, “Oh, you can barely tell that she has DS.” In my eyes, that’s what I thought. Some others at drop-in Mum groups noticed it, but not often. So I just left it at that and would not even mention that my daughter has Down Syndrome. Only at about 8 or 9 months did I start to say it more publicly to strangers that I’d meet. Ironically, this was the time that I felt that this was her normal. Having Down Syndrome was part of made her unique and I felt comfortable talking about it without feeling like others would judge her or me. I just wanted to be her advocate and, at the end of the day, for people to just see her for her, a little girl a with personality and individual traits, DS being just one of them.
Can you be honest about your initial feelings and share what they were, this could be a huge help to new mamas so they know that all of us share some thoughts and feelings when we grieve what we thought we were having.
I was mainly sorry for myself and not knowing what kind of a pregnancy I would be in for. It felt like the Down Syndrome diagnosis meant that something could go wrong that would cause a miscarriage, so that made me super worried and anxious. I did not know what to expect, from a health perspective, at all as to what our kiddo or we as parents would go through. I was definitely unsure about her future in the school system, since bullying and judgements are part of that environment. That part still puts me on edge.
What enabled you to move from learning the diagnosis to embracing it?
I think I always accepted my child and I was grateful for a mostly uncomplicated pregnancy and a healthy baby. The first time I got to see her and hold her was the best feeling in my entire life. She was perfect, Down Syndrome and all. That felt like heaven on earth for me.
I also had a strange dream the night after I met her for the first time, I dreamt about seeing myself in the mirror and as I looked at myself my features changed and l looked like I had Down Syndrome. I think that image is so vivid still. It for me still shows me what other people will see, but that means nothing. It’s just an appearance and not who a person is.
How did friends and family respond and was their response what you expected?
Some of the family was very supportive, some shocked and some did not have any reaction. It was all over the place when they first met our daughter.
I find the hardest part for me has been around hospitalization and doctors’ appointments and how sometimes the assumption from family is that my daughter is sick or sickly. For sure, sometimes we’ve been in hospital because our child was very sick. For the most part, though, the appointments are follow-ups to keep her on course. It’s been hard to deal with that perception. Family and friends are curious about her milestones. That is always a challenge to explain. I try to explain hypotonia or developmental delays to help them understand why she is not reaching some of the milestones like her peers yet and how she’ll have to work twice as hard.
How has your life changed?
For me, just becoming a parent is a huge change. I totally did not know what I signed up for–and oh yeah, I’m an only child. My parish priest always talks about the onlies, including himself, being very used to everything being about themselves, ha ha! That changed. Breastfeeding, pumping and the lack of sleep made the first 3 months feel like a tidal wave! It’s not different from the experience of any other new parent. For both me and my husband, this is our new normal. Our parish priest actually helped us understand this; our daughter is our “typical” kid cause she’s our first kiddo!
Angelique is a wife to her husband Peter, a mother to her daughter Pauline and baby Pat in heaven, and works full-time as a UX researcher. She lives in Toronto, Canada. She has always been inspired by her Catholic Christian faith and to walk with Christ on this journey called life. You can follow along on Instagram @angelqube.
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