My Pregnancy and the Diagnosis
As I’ve written before, during my Down syndrome pregnancy, we found out early that our second child — a son — had been diagnosed. There was never any question that we wanted him. To me, it didn’t make sense that I could be overjoyed to find out I was pregnant at seven weeks, and then, at week thirteen when the diagnosis came, suddenly not want him anymore. He was still the same baby!
At the 12-week ultrasound, everything looked perfect. The nuchal translucency (NT, [link]) was 1.7. He was doing somersaults, and I could count all his fingers and toes. He showed just how alive and well he was. The doctors said that if there were any major health concerns, they would already be visible.
The only reason they sent me for a chorionic villus sampling (CVS, [link]) was because my PAPP-A and free β-hCG [link] levels from the earlier blood test were low. During the ultrasound, I was already crying because I had asked about those numbers. They told me they didn’t mean anything — yet they clearly did, since they referred me for further testing. I felt deceived.
I said I regretted coming and didn’t care about the diagnosis. Still, after talking to my partner, I agreed to do the CVS. The next day, I received a call confirming that our baby had Down syndrome.
When I went to my midwife, she said: “What are you even thinking, having this baby? No medical professional understands this! He will be a burden to your family and society.”
She couldn’t have been more wrong. I changed midwives and finally got the support I needed.
Learning and Finding Support
After the diagnosis, I began to search for information. I didn’t know much — only about “almond-shaped eyes” and delayed development. I immediately looked for contact with someone from the Down syndrome community. The community leader was incredibly kind. She sent me a thoughtful gift and a book, which I read right away. She also connected me with other parents raising children with Down syndrome.
Through her, a social worker, and my own searches, I contacted eight mothers. Each had a different story — but they all shared one thing: deep love for their children. One of them even had a brother with Down syndrome.
I also visited a mother with an 18-year-old daughter. What I learned is that every person with Down syndrome is unique. They share the same diagnosis, but their health and development vary widely. Some have almost no health issues; others have more challenges. But one thing is certain — they are friendly, funny, social, and deeply loved.
The Rest of the Pregnancy
A few weeks later, the geneticist confirmed that my son had regular (trisomy 21) Down syndrome, which accounts for over 90% of cases. The other possible forms are translocation and mosaicism [link].
I came prepared to that appointment — I had eleven questions. After reading the book, I wanted to know about possible heart conditions, since more than 60% of babies with Down syndrome need heart surgery. I also asked about vaccination risks, developmental support, and available government aid. The geneticist was pleasantly surprised at how informed I was and guided me to ask further questions from the social worker and pediatrician.
Then came all the check-ups — echocardiography [link], growth monitoring, ultrasounds, blood tests, and more. Living in the countryside, I felt like I spent the whole pregnancy driving back and forth. It was exhausting!
Thankfully, everything looked fine. The baby was a little smaller than average, but his heart was healthy — that was the most important thing. Because of his size and a slightly higher risk of stillbirth, the doctors recommended inducing labor one week early.
At 39 weeks, I went to the hospital. They began induction, but nothing happened. The next day, they tried again — still nothing. Finally, at 12:15 p.m., I was taken for an emergency C-section. Within half an hour, my son was born — the cutest, pink, active, and loud little boy. His Apgar score [link] was 8/9.
The First Weeks and Beyond
We stayed in the hospital for 12 days, going through many tests: echocardiography, abdominal and brain ultrasounds, eye and blood tests. Everything looked fine.
The only concerns were hearing and temperature regulation. He always passed the hearing test with one ear, but not the other. We had to keep him warm — next to me, dressed in layers, or in a heated water bed.
Breastfeeding was tough at first. Looking back, I wish I had trusted my instincts and nursed more instead of pumping and feeding him with a syringe. Eventually, it worked out — I ended up breastfeeding him for 18 months, waking every 1–3 hours at night.
Our son is truly a ray of sunshine. He brings so much joy to us and everyone around him. Once, at the hospital, while I was waiting for a blood test, he smiled and waved to everyone — brightening the whole room. A woman said that the hospital should hire him as a mood booster.
I still don’t understand why so many people were negative during my pregnancy. Comments like “What are you thinking?”, “You can’t breastfeed,” or “He’ll have major health issues — I’d never keep him.” Where were the words of kindness?
Where were the “Congratulations! You’re about to welcome a little sunshine into your life. Everything will be fine — we love and support you.”
Looking Ahead
I’ll share more about how he’s doing in future posts.
What are your thoughts? How do you feel about raising — or knowing — a child with special needs?
You are not alone in this.
If you would like to go deeper, you can buy the e-book Our Journey – A Different Path for honest reflections and lived experience beyond this post: https://payhip.com/b/c9s3b
You can also purchase supportive routine templates designed to help parents and children navigate daily life with more clarity, structure, and understanding: https://payhip.com/b/RYA65
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