An estimated 92 percent of all women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies according to research reviewed by Dr. Brian Skotko, a pediatric geneticist at Children’s Hospital Boston.
Birthing trends worldwide show that women are waiting longer to have children and advanced maternal age is associated with increased risk of having a child with Down syndrome.
The number of Down Syndrome cases is declining enough in the United States to raise concerns that research funding to study the congenital condition will dry up. There’s also worry that more people will deny themselves what some call the “gift” of raising children with Down syndrome.
Three surveys conducted by doctors at Children’s Hospital in Boston suggest the reality of Down syndrome is positive for a vast majority of parents, siblings and people with Down syndrome themselves.
Among 2,044 parents or guardians surveyed, 79 percent reported their outlook on life was more positive because of their child with Down syndrome….
Skotko also found that among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome. A third study evaluating how adults with Down syndrome felt about themselves reports 99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked.
“So once again the culture of death distorts the truth by suggesting that parents are doing the right thing by killing their Down Syndrome child. The culture of death says, “Better dead than have Downs.” But 99% of adults with Down Syndrome report they are happy with their lives. I doubt you would find anything close to that percentage in the “healthy” adult population. And yet it is these very happy adults that are being targeted for destruction in the womb.”
We didn’t know Kate had Down syndrome until she was born.
Knowing that it wouldn’t make any difference, we didn’t choose to have any prenatal testing — and so, her diagnosis was a surprise to us on her birth day. People have asked me since if I would have preferred to know beforehand and I still say “no.” I like to deal with the whole reality of things — not pieces of it — and meeting her added perspective to the situation instead of this ambiguous, surreal “diagnosis” circling in our heads for months. Suddenly, Kate was here. And suddenly, her diagnosis was something we had to deal with.
And then one day soon, it wasn’t something we dealt with — it was something we celebrated.
But that one day – that celebration day – when the sky opened and the gift of perspective fell upon us – that can’t be conveyed in a sterile doctor’s office during a prenatal diagnosis.
And, truthfully, most doctors don’t even know where to begin — even with the best of intentions. And so they shift their feet, they stick to the text book, they “share the options.” It’s not their fault. They, too, are operating from the same place we were on the day Kate was born — and we focused on the facts. But the “facts” are not where the magic lies.
Because if you look at the facts:
79% of parents report their outlook on life is more positive because of their child with Down syndrome.
99% of adults with Down syndrome report they are happy with their lives, 97% like who they are, and 96% like how they look.
And yet, 9 out of 10 babies who are diagnosed with a prenatal Down syndrome diagnosis are terminated. That’s 90%.
And for the scared, hurting parents who just received an overwhelming diagnosis — they’re not processing the facts that if quality of life is the only consideration here, this baby will make everything in their life a whole lot better.
But this post isn’t about prenatal testing (or the ongoing political debate regarding new, earlier tests).
And really, it’s not even about abortion — though, you can’t help but pause at those statistics.
It’s more about perspective.
My OBGYN asked me the other day if he could give his patients my contact information if they received a positive prenatal diagnosis. He was aware that many of his patients needed more than a well-meaning, “Most families find this to be a great blessing,” — in fact, a favorite patient of his had just recently terminated her pregnancy based on the diagnosis. I said, “Of course.” (Of course.)
But then I started thinking about what I would say to someone in that position. Someone who may have a very different world view than me, a different value system, a different support system. Someone who wasn’t ready to hear all the details and meet all the high-functioning, charming and successful adults with Down syndrome (I know I wasn’t in those first few days).
And then, aha, I thought.
I wouldn’t want to say much at all.
I would just want them to meet her.
Because that’s where the magic lies.
After all, the facts will always be there when you need them. The happiness quotient for the whole family. The limitless possibilities for what you will no longer see as a disability. The community. The gift of perspective. The secret to life. I can tell you all those things — doctors can tell you some of those things.
But what a prenatal diagnosis cannot tell you is what it will feel like to look into those eyes and know:you’re one of the lucky ones.
If They Had a Voice…
The day Marley was born, I went straight to the nursery and held her for well over two hours. I just held her and cried because I had never experienced such a love for anyone or anything in my life. I think the Thai nurses thought I was crazy because eventually they told me I needed to go be with my wife. Three days later, before we left the hospital, the Pediatric Doctor told us she thought Marley might have Down syndrome.
My reaction: Are you freaking kidding me? I immediately had a panic attack and they took me down to the ER. Thoughts were racing through my mind: How could my perfect daughter have Down syndrome? How could they not know for sure? How could the general ultra sound- that said we had a one in eighteen thousand chance of having a child with DS- be wrong? Why was God punishing me? How could I live with a daughter that was going to be rejected by everyone… including myself?
I entered into a deep depression for the first year of Marley’s life. My wife was so concerned about me that I started taking anti-depressants and seeing a counselor. I contemplated leaving my wife, or giving my daughter up for adoption, and suicide. I would lie awake at night thinking about my future, and searching for a reason to live. I believed everything negatively the world told me about Down syndrome, and viewed it as a curse on my family. The entire time I worried about how this would change my life! That is when I realized that my relationship with God was not where it needed to be, despite the fact that I had gone to a Christian University, been ordained in a Christian Church, and moved overseas to teach at a Christian school.
Years ago, before my father died or Marley was born, my father told me,
“ If you wanted to fix a problem, then do something about it”.
That is what I did. First I stared reading through Psalms to find comfort in the Scriptures. Next I started researching and calling every family I could find that had a child with Down syndrome. I owe a great deal to these families because they were willing to talk to me despite the 12-hour time difference between Bangkok and EST. I also started forcing myself to interact with my daughter. She was desperate for me to start loving her, and continued loving me until I broke down and did the same. And finally, I talked to God. I talked to Him just like He was sitting in a chair beside me. I was open and honest about the entire process, and then I began finding peace.
Healing is a process, a journey, and that is what prompted me to make this video. I would have never experienced this life changing transformation if Marley had not been born. It is true, there are difficult times having a daughter with Down syndrome. But it also true, that she is very much like any other child. Marley smiles, laughs, plays, is able to meet many developmental milestones (albeit her own pace, with her own style), makes mistakes, and most importantly- completes our family. She literally brightens my day every time I see her.
The “Medical Community” focuses on so many of the challenges associated with Down syndrome, that we developed this unnecessary fear – just because it is different. The truth is I am a better person today because of my daughter, my daughter that has Down syndrome. I am thankful for a wife that was willing to push me to change, and support me when I struggled. Mostly I thank God for Marley. I remember praying while waiting those first two weeks to get her confirmed diagnosis, “God if you heal my daughter, then I will give up my own salvation”. God didn’t need my salvation- that was a gift from Him to me, just like Marley is a gift to us.
The reality is that I am still saddened that Marley has Down syndrome, but I am beginning to realize that God can bless us regardless of our circumstances. I will never be able to fully understand why Marley has Down syndrome, but I do know she has made a difference in my life, my wife’s life, and in the lives of so many in our community.
A woman who aborted her Down Syndrome baby said the following:
“Mike and I had discussed what we would do if amniocentesis revealed a serious genetic condition long before the test. For us, the diagnosis of Down syndrome was reason to choose abortion. Our thinking was clear… We were eager to have a child, and prepared to change our lives to make emotional, social, and economic resources available. But the realities of raising a child who can never grow to independence would call forth more than we could muster, unless one or both of us give up our work, our political commitments, our social existence beyond the household…. No single family should have to shoulder all the burdens…”
A valuable list of resources for parents of children with Down syndrome compiled by: www.BeNotAfraid.net