A Response to ‘As Long As It’s Healthy,’ From Someone Who Wasn’t Born Healthy

Whether or not it’s intentional, there seems to be a stigma around babies born with health conditions. At least that’s the message that comes across when I hear expectant parents say they don’t care about the gender of their unborn baby “as long as it’s healthy.”

I want to ask these soon-to-be-parents, what if the baby isn’t healthy? Will you still love it?

You see, I wasn’t healthy. My parents were like any other first-timers. They were thrilled to be pregnant and couldn’t wait to meet their perfect little bundle of joy. Only I wasn’t “perfect.”

My parents didn’t ask for Treacher Collins syndrome, a condition that affects the formation and development of the facial bones and tissues, any more than I did. I was a child who needed to be monitored while eating in case food became caught in the opening on my soft palate, a child who had to undergo countless surgeries to build up missing facial bones, a child who required a hearing aid to listen to everyday sounds. My parents didn’t have a “perfect” baby. They had me instead.

My birth brought about confusion, concerns, fears, heartache, and tears. Thirty-four years ago, in 1982, my syndrome was not widely recognizable, so the unanswered questions surrounding my health issues overshadowed the joy of my birth. The perinatal nurses in the hospital ignored my parents. They shot them looks of sympathy and pity from afar, but didn’t offer support or encouragement.

Following my seemingly questionable future in the few days after my birth came an outpouring of love. My parents loved me, and they worked diligently to find answers to their questions, and once they did, all of our lives changed. They learned the words “Treacher Collins syndrome” and plotted out the course of reconstruction. This may not have been the life they pictured they would lead as parents, but it became only a fraction of it. They had plenty of those “normal” parenting moments, too, from scolding me when I gave them attitude to helping me analyze poems none of us could understand. My parents stood by me through all of the difficult times and set me free when I begged for independence. Most importantly, they loved me.

Now that I’m grown, I cringe every time I catch an expectant parent say, “Oh I don’t care if it’s a boy or girl, as long as it’s healthy.” But what if your baby isn’t healthy? Would you still love him or her? Would you have loved me?

When I hear this phrase, I feel guilty that my syndrome altered the course my parents were headed down. It makes me feel like I ruined what should have been the most special day for them. Feelings of confusion and helplessness encroached on the day.

I may not have been the healthy baby my parents envisioned having, but I am the strong, confident, intelligent woman they raised. I am an athlete, a scholar, an artist, a writer, a speaker. I have my flaws, but I am successful.

I don’t expect people to stop wishing for healthy. But here’s the thing about life: anything can happen. You can be born unhealthy and live a full, complete life, or you can be born healthy and encounter physical or mental health challenges as you age. There’s no telling what can happen. A healthy baby does not guarantee a happy, healthy life.

No parent wants to watch his or her child suffer. They want to watch her grow, play and thrive, and live a life without barriers or setbacks. Believe me, I fully understand that. If I had a child, I would hope for the same thing. Having been born “unhealthy” myself, I also understand that my circumstances never limited me from doing any of those things. I may have had a unique upbringing because of my reconstructive surgeries, but I also lived my life just as person born “healthy.” I have my parents to thank for that.

My plea to expectant parents is to stop saying “as long it’s healthy,” because having a healthy baby doesn’t guarantee happiness. Instead, hope for your child to live a great life, a life full love, joy, and laughter. Your baby may be born with complications, but that doesn’t mean they can’t grow to become honorable, successful human beings. I am proof of that.

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Thinkstock image by NataliaDeriabina