The Moment I Decided to Keep My Baby With Down Syndrome


The day after I got the phone call that my prenatal Panorama test results had come back positive for Down syndrome, I gave a friend a ride to the airport bus. When I told her the news and mentioned the possibility of termination she said, “That would be the compassionate thing to do.”

A sentiment echoed by author Richard Dawkins’ insensitive tweet in response to a woman who expressed her ethical dilemma if she were to become pregnant with a baby with Down syndrome. “Abort it and try again,” he wrote. “It would be immoral to bring it into the world if you have the choice.”

It’s easy to make statements like this when you have less than a 1 percent chance of ever actually having to make that decision. When it’s a live baby kicking inside of you, I believe it’s a different situation.

Getting a prenatal Down syndrome diagnosis threw me into a moral quandary that I wasn’t prepared for. On the one hand, this meant our child would have at least some degree of intellectual disability. On the other hand, it also meant our child would most likely grow up to be happy; in a recent survey of 284 people with Down syndrome, 99 percent reported they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they look.

I’m not sure what the statistics are for the “typical” population, but my hunch would be the numbers would be far different. Most of the people I know would not say they’re happy with their lives or that they like who they are or how they look.

Which begs the question: Is it more important for our children to be smart or for them to be happy?

Which led me to an even deeper question. Why do we have children at all? They certainly do not make our lives easier.

These questions sat heavy on my mind as my husband and I debated our situation. Religion could possibly make questions like these easier to face. Since neither of us is religious, we were pretty much on our own.

One Sunday morning I woke up early and in the quiet of the morning decided it was time for some spiritual questing. I got dressed and made my way to the Unity Spiritual Center near my house.

The sermon that morning seemed particularly relevant to me. I blinked back tears throughout the service. After it was over I made my way downstairs to find out more about the church. A woman introduced herself, and we began chatting. I asked her what she did, and she told me she was a woman’s health consultant and used to be a midwife.

Suddenly I found myself weeping in her arms as I told her through sobs that I was pregnant and the baby had Down syndrome and a heart defect. She soothed me and told me that it would be OK.

She told me she’d only delivered one baby with Down syndrome when she was a midwife. She said the love in the room when the baby was born was stronger than anything she’d ever felt before.

She felt that the reason so many babies with Down syndrome had these heart defects was because their hearts were so big and full of love. “If love was revered as much as everything else, people with Down syndrome would be held in the highest regard,” she said.

It was at that moment that I realized that I was going to keep this baby no matter what. I’d already felt that amazing love she was talking about.

And why shouldn’t love and happiness be held in the highest regard? What else is there?

A peace settled over me that day and continued through my pregnancy. I felt as though my baby was reassuring me that everything really was going to be OK. My baby had a complete AV canal defect, which meant that instead of four chambers, he only had one. One great, big, open heart. And that great, big, open heart was sending me wonderful, pure love that enveloped me.

Unfortunately, my husband couldn’t feel the love coming from the baby the way I did. He struggled with his fears and worried his way through the entire pregnancy. The moment our son was born, it all changed. The love Benjamin brought with him burst into the room and filled my husband’s heart.

tamar pixley baby

It’s a strange journey we’ve had these past few months since he’s been born. With the trouble he’s had breathing on his own and the heart surgery looming in his near future, we live in almost constant terror of losing him.

And we still worry about what his future will hold. Despite the uncertainty about what having Down syndrome will really mean for him as he grows up, we’ve already become Down syndrome activists.

This past Sunday we woke up early, packed extra oxygen and drove down to Denver for the Step Up For Down Syndrome Walk. I was both excited and terrified as to what we might find there.

Right now Benny is just a baby. He may be a little more floppy and spend more time in the hospital than other babies, but for the most part he’s just like most babies. I knew that seeing older kids and adults with Down syndrome was going to give us a glimpse at what his future might be like, and that could be hard.

When we got there I was surprised by how many people there were and how few of them had Down syndrome. We made our way to the stage near the starting line, and I was just thinking that this was easier than I’d imagined when the announcer called forward a young man to sing the Star Spangled Banner.

His voice was strong and unmistakably belonged to a person with Down syndrome. The crowd cheered him on even as he struggled with some of the words. A mixture of tremendous joy and sorrow filled me at his imperfect delivery. I tried to hold back the tears but couldn’t stop myself from pressing my face into my husband’s shoulder and bawling.

True love means accepting things as they are, but that’s not always easy. Our society values intellectual ability and verbal capacity above big heartedness and joyfulness. Many people think it is kinder or more considerate to end a life rather than bring a child with Down syndrome into the world.

As a mother I want to protect my son from that world. I want to prove them all wrong, stick a finger in Richard Dawkins’ fat, stupid face. But I don’t know what the future will bring. I don’t know that my son will overcome all of the prejudices against him. I don’t know what level of ability or disability he might have. 

All I know is that for me, I’ve answered the question of whether it is more important for our children to be smart or to be happy. I believe it is more important for them to be loved. And I do love my son, whether or not he’s smart or happy. And that is why I have children. To teach me that kind of love.

This post originally appeared on Pixleydust.

TOPICS
JOIN THE CONVERSATION

Related to Down Syndrome

young boy with down syndrome

When I Wrote to A.C. Moore About Featuring People With Down Syndrome in Ads

I’m what you call a bit of an advocate. I have a son with Down syndrome, and I spend a lot of my time raising awareness, raising funds and trying to make a difference for people with Down syndrome. On my own, I write to companies that have inclusive advertising practices. I thank them for [...]

How a Little Voice in My Head Helped Us Cope With the Diagnosis

Dear Down Syndrome, When I first began to think about what I wanted to say to you, I searched my heart for anger or resentment. Surprisingly, I found none. I was so certain that I must hold some negative feelings that I attempted to force the words. None came. I realized that my feelings toward you [...]

6 Tips to Consider When Planning to Adopt a Child With Down Syndrome

I was recently asked to share my experience with adopting children with Down syndrome. My hope is that with this post, I can share my heart as well as give some practical insight into what this journey has been like for our family and me. Adopting a child with Down syndrome was not something I’d dreamed of [...]

This Woman Asked Twitter to Help Get Her Stepson With Down Syndrome a Job

Fiona Hodge, of Liverpool, England, has a stepson named Ben Small, who has Down syndrome. Despite multiple work-placement programs, Small, 26, could not find employment. Small’s experience included work at an employment support agency, an eight-month placement with a national pub chain and a third unpaid placement with an international burger chain. Here, he kept [...]