I received my son’s diagnosis early in pregnancy — at 12 weeks. I know many people get the diagnosis in the hospital after birth. In some ways, it was easier for me because the first reaction — shock — happened early in the pregnancy. In the hospital, it may be easier in a different way because you can act immediately.
But pregnancy was extremely hard. Nothing is done at that stage. There is only endless uncertainty, fear, worry, and more tests. My first feelings were shock and fear. My first thoughts were: What will happen to him? How will I cope?
I never once doubted that I wanted him. Some people may question whether to continue the pregnancy, but for me, that was not an option. I found out I was pregnant at 7 weeks, and I wanted him just as much at 12 weeks — despite the diagnosis. It’s the same baby.
When I got the diagnosis, I cried a lot. I knew there was a risk, but the actual confirmation was still shocking.
The phone call that changed everything
The genetic counselor called, told me, and then ended the call. In a way, that was wise. A few weeks later she called again, and we could talk more and I could ask questions.
Immediately after I got the news, I called my partner crying and told him: “It’s a boy, and he has Down syndrome.” He was very supportive. He said simply: “A child is a child. We will manage.” That was a huge relief — to know my partner wanted the baby as much as I did.
I wonder how people cope when they are completely alone, or when their partner is not supportive. I can’t imagine how difficult that must be.
The first days after the diagnosis
On the first day, nothing else happened. My daughter was under two years old, so we didn’t tell her anything yet. We only said that she would have a brother.
On the second day, I started preparing — both physically and mentally. The first thing I realised was that I knew nothing about Down syndrome, except what I had seen in the media: “mongoloid eyes” and “developmental problems.” I realised that if I didn’t know, then nobody around me would know either.
The support that changed everything
I immediately started searching for personal stories and support. I easily found eight wonderful women who shared their experiences. They were all different, but they helped me understand that we could manage.
One of the biggest supports for me was the Down Syndrome Association and its leader. She immediately congratulated me, sent a gift, and even a book to help me learn more. That kind of support meant a lot — not only emotionally, but also practically.
When people are faced with this diagnosis, they often feel isolated. But organisations like this show you that you are not alone.
The hardest part: uncertainty and fear
My next question was: how do we tell my partner’s parents, who live in the same house? We spoke calmly and matter-of-factly, and they were supportive. They said: “A child is a child.” I don’t know how I would have coped if they had not been supportive.
I called my midwife and told her. She said I needed support. At the hospital, I was referred to a pregnancy crisis counselor, but that did not help me. I was still in a very bad state when I drove home — I probably shouldn’t have been driving at all.
Looking back, it was all fear and uncertainty.
The truth about Down syndrome
The strangest thing is that the general public often believes a child with Down syndrome is a tragedy. But families who have experienced this diagnosis do not think that at all. They love their children, care for them, and their children are full members of the family — just like our son.
This is something I want everyone to understand: a Down syndrome diagnosis is not a tragedy. It brings challenges, yes, but it also brings joy, love, and growth.
The importance of sharing your story
If you are newly diagnosed, you may feel alone and scared. I want you to know that there are people who have been through it, who understand, and who can support you. Reading real stories helped me more than anything else.
More about my journey
My e-book contains a longer story about my son and my thoughts, feelings, and fears at that time. It also includes my current reflections on the journey and how my feelings have changed over time.
If you want an honest and real story, with practical questions and reflections, you can buy my e-book Our Journey – A Different Path.
You can also purchase supportive routine templates: https://payhip.com/b/RYA65
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