My Baby Girl Will Be Born With Down Syndrome: A Dad's Perspective
I was in a meeting in the office when I saw a missed call from an unrecognized number then three missed calls from my wife. Today was the day we were getting results after the doctor recommended the NIPT test following two soft markers for Down syndrome. I walked out of the meeting into the next room and called my wife. She was teary and quiet and said, “Im going to the clinic, I’ll speak to you later.” I couldn’t wait, so I called the clinic. The doctor picked up, “I’m sorry, the test came back positive for Down syndrome.” She sounded upset, too.
My heart sank, even the doctor was sad, this must be bad. We had big plans for our little girl. She was going to change the world. Stand up for women’s rights, be a role model for others, make the world a better place. I took a deep breath and gathered myself before calling my wife back. I needed to be strong for her. She was alone and I tried to imagine what she must have been feeling. I wanted to calm her down and tell her it was going to be OK, even if I didn’t truly believe it yet. She needed to know that it was OK and we could manage it together.
I called my wife straight back. All I could think about was how she must be feeling. Nothing else mattered. She was all alone when she heard the news. She didn’t even want to tell me over the phone. “Don’t drive please,” I said, “just take an Uber, I don’t want you driving. I know the result. Its OK, don’t worry, its fine.”
Although I was shocked at the news, my main focus was her feelings. I couldn’t change the results, I couldn’t change the genes, nothing could be done. I needed to be strong for her, otherwise I feared she would feel worse. Termination wasn’t an option for us. Not for religious reasons, or against any right to choose, but unless it’s a severe risk to the baby’s quality of life, our personal choice would not be to terminate.
I called her in the cab, she couldn’t talk. She just listened. I did the talking. “If anyone can look after a child with a disability, it’s us. We were chosen for this, we have a purpose. We are great parents and our kids love us. If kids with Down syndrome need love, then she’s come to the right place, there is no shortage of love in our house, that is what we do. Anyway, so what if she has Down syndrome? What’s the big deal? She will still be treated like a princess and spoiled by her brothers. It doesn’t make a difference to me. Who cares…?”
Not that I had a clue what the condition meant. Would she be able to talk, walk, feed or clothe herself? I was just winging it, being two different people at the same time. One, the strong supporting husband, and on the other side worried about the future and how our lives had changed forever — but I truly believed all the things I said. Maybe I was also talking to myself while I was talking to her.
At the fetal clinic there were other couples, excited to see their kids in 3D and find out the sex of the baby. Here we were, looking solemn, my wife in tears. The staff were looking sympathetic and other couples were just looking. I was embarrassed, like everyone must be talking about us, thinking, “they must have got it.” I tried to act as if everything was normal.
The doctor took us in. She talked about termination. Although illegal here, it can be done in our home country. We should do an amniocentesis to be sure, but might risk miscarriage. “If you will terminate you need to be certain.” We weren’t going to, although it crossed my mind briefly in that conversation for the first time.
Then the research started, Google, YouTube. We saw the videos and the TEDtalks and the articles. We couldn’t believe the attitudes towards Down syndrome from the doctors compared to what we saw. I thought we were moving towards equality, why is it acceptable to terminate based on a Down syndrome diagnosis? It is because they look and talk differently? That’s the only difference I could see. Sure, development takes a bit longer, but so what?
We told our friends. They were supportive and impressed by our attitude. I don’t know how they would have reacted if it was their child. They may have felt a sense of relief and gratitude it was not them, but then they were surprised at how positive we are. I guess they didn’t know what we knew. Our parents were less supportive, maybe due to their culture and old way of thinking that suggested people with disabilities should be hidden from society or born as a result of some bad karma. That’s the hardest thing to deal with especially when you realize a lot of people may think like that in private.
The due date is coming up and the signs are showing, it’s becoming real now. This is what we have been preparing for. We are excited to welcome her and have done lots of shopping. Her brothers (ages 4 and 6) are learning Makaton. She can still change the world, be a role model and stand up for people’s rights, probably even more so now than she could have otherwise. We are proud to have her in our family and ready to show her off to the world. This is the beginning of our journey and we are ready to take whatever comes next thanks to the encouragement from the Down syndrome community and all the positive stories we have seen.