Pregnant During a Pandemic- Our Diagnosis Story
Updated: Apr 11, 2021
The COVID-19 lockdown had just started here in Ontario when I found out that I was pregnant in late March of 2020. My husband and I had just gotten married months earlier in Jamaica and we had always planned on adding another addition to our family. We were so shocked at how quickly it happened, but we were so excited.
I loved being pregnant, I would rub my tiny bump constantly.
We shared the news with our parents by holding up a little onesie that said, “Baby Clark November 2020.” They were over the moon, and they couldn’t wait to be Grandparents. Our baby would be the first grandchild for both of our parents.
When we reached the second trimester, I celebrated by sharing a post on social media of the Baby Clark onesie along with tiny baby socks and a giraffe blanket. The likes on my posts poured in, everyone shared in our excitement.
The first time I was asked if I wanted to complete the enhanced first trimester screening, I declined. I thought there was no purpose as it never even crossed my mind that my baby could possibly have a trisomy. I thought trisomy babies were born to older mothers, not healthy mothers in their 20’s and I was only 26.
What a misconception.
I changed my mind and requested the screening and had it done around 13 weeks, but my motivation was the extra ultrasound. I didn’t want to wait until 20 weeks to see my baby again.
The ultrasound was so neat I was able to see this mini human growing inside of me moving around on the screen. I shed a tear of joy as I watched. I purchased photos and a short clip from the ultrasound clinic and could not wait to share them with my husband, friends and family.
They gave me a copy of the ultrasound report with the blood work requisition. I saw that the nuchal translucency was reported as 3.2mm, I had no clue what that meant so I googled it. Google said it was outside the normal range, but it wasn’t excessively high, so I wasn’t concerned.
Well, it wasn’t long after I had the blood work done that I got a call, there was a 1 in 99 chance that my baby would have Down syndrome. My doctor reassured me that this is just a screening test, and it could be incorrect. He encouraged me not to worry too much about the results. Well, I worried; I worried a lot. I cried. I told some close family members who also reassured me that was still a low chance.
I was then offered the Non-Invasive Prenatal Testing (NIPT) which would be more accurate. I went for the bloodwork and waited anxiously for the results.
I went in for my next doctor's appointment around 15 weeks. Right away I knew something was wrong. I could tell by the quiet whispering between the nurse and the doctor in the hall. They knew that this news would not be received well.
Let me preface the next part of this diagnosis story by letting you know that my doctor is amazing, I am so grateful to him for all he has done for me. I know in the Down syndrome community there is a lot of conversation around how a healthcare professional should deliver a diagnosis. This may not have been delivered up to that standard we are advocating for, but I have no resentment towards the delivery of the news, I know it wasn’t easy for him.
So here I was sitting alone in this appointment because COVID-19 protocols did not allow for my husband to be with me. The doctor and nurse did say had they received the report prior to the morning of my appointment they would have made an exception to have him with me.
“There is a 98% chance your baby has Down syndrome, I’m sorry.”
My world shattered.
I knew I had to break the news to my husband myself which was horrible for me. I decided I would act like nothing was wrong when my husband called to ask how the appointment went because I didn’t want him speeding home from work upset.
Yeah, that did not happen. I tried so hard to sound calm and collected when my husband called to check in on me. He knows me too well and said he was coming home. He got home and I broke the news. It hit hard, all I remember was silence and tears. I couldn’t talk about it without breaking down for weeks and that cute pregnancy announcement online was deleted quickly (which I regret).
We held onto hope that we were that 2% and that the Non-Invasive Prenatal Testing was wrong, but we were not overly optimistic. I was offered an amniocentesis which is a procedure to collect and test a small amount of amniotic fluid. This is a diagnostic test so we would know for certain if the baby had Down syndrome.
I went in for my amniocentesis around 16 weeks. I tried to make the best of it and asked the tech if she could see the gender even though I knew it was early to be able to tell. Well clear as day she could tell he was a boy. I had a glimpse of excitement that I hadn’t felt in a while. We couldn’t do the amniocentesis that day, so I was asked to go back a week later.
I bought a balloon on my way home from the appointment that said, “It’s a Boy!” and I asked our parents to stop by so we could reveal the gender. There was a bit of excitement but not a huge reaction because everyone was still waiting on the amnio results.
I had the amniocentesis the next week, which wasn’t as painful as one would think considering you are having an extremely long needle stuck into your uterus.
At this point my pregnancy had already been deemed high risk so I was seen by an OBGYN at the high-risk unit in the nearest city. I walked into the appointment to meet with a new doctor. She sat me down and told me the results that I already knew, she didn’t apologize, she didn’t make it sound like a horrible diagnosis. She just presented all of my options for the pregnancy.
I’d be lying if I said I didn’t weigh the options presented to me briefly, especially after reading a lengthy list of serious health issues associated with Down syndrome. Although I knew in my heart, I would not be able to terminate the pregnancy. I loved that baby so much.
The 20-week appointment was a level two anatomy scan which should detect most major defects of organs and limb development. When we got the results, I found comfort in knowing that no major health concerns were detected on the ultrasound. The tears I’d been crying for weeks slowly dwindled down, and I started to get excited about the pregnancy again.
The results were also delivered by a genetic counsellor from the children's hospital who explained that our baby has a rare type of Down syndrome. He has a translocation on the 21st chromosome. This means that he has a partial third copy of chromosome 21 and it is attached to one of his full chromosome 21s.
This more specific diagnosis came with an extra set of worry. Translocation Down syndrome which only accounts for about 3% of people with Down syndrome is the only type of Down syndrome that may be inherited from a parent. Theres a long explanation on how this happens even though neither parent has Down syndrome and I’ll save you the details right now but if genetics fascinate you, it's neat to read up on.
We were offered to have karyotypes done for both my husband and I which we did have completed. We waited about two months for the results which identified that neither of us are carriers of the translocation. This meant that our baby’s Down syndrome was a random occurrence and any future children we may have will have a low chance of also having Down syndrome. I for once was crying happy tears.
There was a grieving period that lasted most of the pregnancy and the sadness came in waves. I have difficulty putting it into words. You find out you’re having a baby and you dream up what life will be like with them and who they may grow up to be. Then you receive the diagnosis and those dreams all change in a matter of a seconds. Your thoughts move onto thinking about the challenges associated with Down syndrome. One of the most stressful thoughts was thinking 18+ years in the future, would he ever be able to live independently?
Overtime I found that the less I thought about the distant future and tried to focus on the near future the less anxious and distressed I was. Will he have challenges? Absolutely. Will worrying about them right now change anything? Probably not.
A friend recommended therapy to me and I didn’t think it was for me, but I gave it a try. I wanted to process all these overwhelming emotions as much as I could before he arrived so I could be a better mom for him. Monthly sessions have helped me tremendously and I truly believe everyone should attend therapy.
We made a new post replacing the one I regrettably deleted when we first received the diagnosis. The post read;
"Baby Clark is a BOY!
But that's not all the news we have to share.
After multiple tests it has been confirmed that our baby boy has Trisomy 21 (Down syndrome).
Please do not apologize as there is nothing to be sad or sorry about.
This is truly a time to celebrate, and baby Clark is so loved by so many already. We cannot wait to meet out little guy.
I have no doubt that he will bring so much joy and happiness to this world."
Note: I made the announcement before understanding the small difference between Trisomy 21 and Translocation Down syndrome.
I was getting really tired of hearing "I'm sorry" from everyone we told in person. This is a normal reaction and I don't blame anyone who used these choice of words, I probably would have stumbled to find the right words if someone had told me the same news before I knew any better.
The gender reveal was posted in hopes to set the tone before he arrived. I knew people would look at his pictures upon arrival and wonder about his characteristics but be too afraid to ask. I really wanted to avoid all of the awkwardness when discussing his diagnosis. I think sharing this news really helped, people knew we were excited for him. Not a single comment on the post said "I'm sorry" they were all congratulating us.
Friday November 13th 2020 our sweet Levi was born at 5:58 PM via a planned c-section weighing a healthy 7 lbs 11oz. I always wondered what would go through my mind when he was delivered. Would I instantly be looking for physical features of Down syndrome?
When I did lay eyes on him for the first time the Down syndrome diagnosis didn’t cross my mind. I saw a perfect baby boy.
We are so lucky to be able to say that Levi was born a healthy baby and is showing no signs of any major health concerns at this time. I know this is not the case for a lot of the Down syndrome community that we connect with. My heart goes out to all the families who deal with NICU stays, surgeries and ongoing treatments for serious medical conditions.
I need to give a huge shout out to our family and friends. We are so blessed to have a strong support system. They comforted us during the difficult times of receiving and processing the diagnosis. They continue to support us, and they shout Levi’s worth to the world. We are so fortunate to have them in our lives and I cannot thank them enough.
If you or someone else, you know just received a diagnosis of Down syndrome. I hope you find comfort in reading about our journey.
Serreh Elizabeth Photography