Our final mom’s story in this blog series on Down Syndrome (although still a few more posts to come), this is Carol and Katelyn who live in our area in Cape Town. Carol is wife to Simon and mother to Katelyn (who has Down Syndrome) and Jess.
For those on our Online Antenatal Class, I want to highlight something Carol says in the story you’re about to read:
Naively, it was not a conversation that we had had in the early days of our pregnancy.
Chromosomal abnormalities might not be a topic you think of discussing with your spouse or partner or family in the early weeks of your pregnancy. Yet, prenatal screening is becoming more and more advanced and tests can be done very early on to detect issues. If an abnormality is found, it leaves enormous life-altering decisions in the hands of “naive” and very vulnerable parents. I was chatting to a medical doctor friend recently and she made a great observation. She said,
From the very first doctor or gynaecologist appointment, expecting couples should be encouraged to talk about what they would do if faced with any medical issues through the pregnancy. That way, whatever they have to face, they have at least contemplated it together before the emotional wave of a test result hits.
Pregnancy should be a time of excitement and anticipation but if you are going to go for the prenatal screening tests you need to know at the very least what they are screening for and what a positive diagnosis would mean.
Here is Carol and Katelyn’s story from diagnosis to current day life sharing their experience but also the resources they have used and would recommend to other parents navigating a similar journey with Down Syndrome…
1. Carol, can you describe the process to diagnosis?
I don’t think anyone forgets a moment like that.
I was 22 weeks and had a simple straight-forward pregnancy. It was the moment when the sonographer went quiet, when she re-visited something over and over again without saying anything. She had been chatting away for almost an hour with the general response of ‘seems average for this stage’, ‘looks good’. Suddenly, before we knew it, we were being told our baby had what they suspected was an AVSD, a hole in her heart. And not only that, but that this particular heart issue was very common in children with Down Syndrome. We were automatically scheduled for an amniocentesis that afternoon.
The following days after that seemed like a blur. Whilst we anxiously awaited the results [the initial 3 day test], the most resounding message from most medical professionals was that we still had enough time, although tight, to terminate the pregnancy. People around us started discussing the process, how, what, where and when. It was overwhelming.
The phone call woke us early that Monday morning. “I am so sorry, the results confirm the baby has Down Syndrome”. Over the weekend, we had come to a decision that we would keep the baby, but the news was still incredibly hard to hear.
We struggled to filter out all the medical input, and to determine for ourselves what we thought, how we felt and what we believed. Naively, it was also not a conversation that we had had in the early days of our pregnancy. Neither of us had ever really known someone with Down Syndrome, and we didn’t have much exposure to any children or people with special needs growing up either. No-one ever spoke to us about the life inside me, that Down Syndrome children are more alike than different, that we would get through the medical challenges and that we would love her from the deepest part of ourselves.
We felt distanced from the life inside me and it was a slow journey of getting ourselves back on track to being excited to meet our little one. We found out she was a little girl at around 7 months with the idea it would contribute to this anticipation, and it did.
The final months weren’t the usual final trimester of a pregnancy. I didn’t get a nursery ready, I got the very basic essentials and not much else. I just wasn’t ready. We were still fairly anxious of what lay ahead. We knew we were in for fair medical challenges with the heart defect, but yet the uncertainty of it all made the rest of the story feel very grey.
2. Was her birth affected by her diagnosis?
We had a planned Caesarian Section as we were advised at least this way all the recommended doctors could be on stand-by to ensure that she’d have as much support as she needed after delivery. But she had another plan. At 37 weeks I went into labour and ended up having an emergency C-section. She was given to me very briefly but was taken fairly quickly into NICU to be put on oxygen just for an extra bit of breathing support. I didn’t get to see her for the first few hours and I found that very hard. It felt disjointed for me and I longed to see her. The nurses would bring her to me for a few moments at a time in the beginning, and then she began to spend more and more time with me. The more time I spent with her, the more I began to adore her.
3. What were the first few months like and how has she progressed to current day?
The first few months were a big messy mix of long sluggish feeds, check-ups, weigh-ins and not much else! At 4 months she went in for her first heart operation (Pulmonary Banding) and she weighed a whopping 4kg! She has been in for two additional heart operations since but it is just incredible how children fight through, how quickly they heal and overcome.
Slowly we met more and more families with Down Syndrome children, read up and partnered with fabulous doctors and therapists. It made us realize we were not alone and that there are support systems out there. There has been incredible therapy and support available for each stage we’ve been at with her and yet for the most part, our time is spent playing, hanging out at home and messing about just like any other family.
Meet Katelyn today – she’s full of life, smiles a lot, absolutely loves school and her friends, is besotted with music and trampolines. We are so incredibly proud of her and absolutely could not imagine our lives without her. She has many fans and is a much loved older sister, cousin, granddaughter, niece and friend.
4. Who can you recommend as professional resources for other parents?
Down Syndrome Inclusive Education Foundation:
Dr H. Pribut (Cardiologist)
Ph: 021 422 4851
Dr S. Vosloo (Cardiothoracic Surgeon, Christiaan Barnard Hospital)
Ph: 021 422 2360.
Dr Vosloo was also recommended by Sam in her story.
Mrs M Perrins (Occupational Therapist)
Ph: 021 683 8074
All of these blog posts and more are included in our Online Antenatal Class. To find out more information about our classes and to sign up click here.