See this post published on The Mighty: here!
To the parents waiting on results from genetic testing:
You are anxiously awaiting the results from genetic testing that will tell you whether or not your baby has Down syndrome. You didn’t necessarily want to do the testing; you knew it wouldn’t change the outcome of love and life for your baby. But you needed to know and no matter what, you will love your baby more than anything in the world. I believe you.
This is part one of your story — the waiting. It is also the part one of many others’ stories as they journey down the road to a possible diagnosis. One of these stories you may be familiar with. It belongs to former Olympian Shawn Johnson and her husband Andrew East. They are popular vloggers and eager to start a family after going through a miscarriage with their first pregnancy.
They waited, like you, on test results to tell them if their baby had Down syndrome and were open about their feelings.
Shawn and Andrew shared their raw feelings of helplessness and fear on their YouTube channel. And as you can see for yourself, there is absolutely a beauty to their vulnerability. Sharing the realities of pregnancy and the “complications” it can bring is empowering, and I applaud them for being authentic in their experience. They have a huge opportunity and platform to bring enlightenment to women’s health and pregnancy. Our world needs more of that.
Then there is part two of your story — the results.
For the East-Johnson family the results of their genetic testing came back negative for Down syndrome or any other “chromosomal anomaly,” as they repeatedly called it (leaving me to cringe every time.) In their video they celebrated that their “baby is healthy,” and shared the doctor’s email, “Congratulations, your genetic testing came back negative. Yay!”
Following this announcement, the “Today Show” picked up the story to air on their show and titled it, “Shawn Johnson Gives Uplifting Update After Pregnancy Complications.”
By no fault of their own, the East-Johnson’s family story and how it was broadcast to the masses has revealed that pervasive ignorance toward disability still exists in our world.
But here is where your story can differ.
Likely, you don’t have a large platform. You are probably not in the public eye. Your worries, your emotions, your questions are hitting you in just as real a way, but in the privacy of your own home in the arms of your own family. All of those worries, emotions and questions are valid. They are fair. They are normal. The unknown is a scary place to sit.
But once the unknown becomes known, I believe doctors have a responsibility to their patients that can influence how a parent handles an unexpected diagnosis. And I believe the rest of us can join in by supporting and affirming the expectant parents.
Doctors: when you suspect the possibility of the unexpected in an ultrasound, or when delivering results to parents, you need to do better.
Many doctors do not present the possibility of a Down syndrome diagnosis with any positivity. For example, Andrew East said about the doctor, “she was somber, and she’s not optimistic. And so we’re like ‘oh no,’ this is a bad problem.’” Then there’s the doctor who emailed the negative results by saying, “Congratulations” in response to their baby not having Down syndrome. Doctors are often the first people parents interact with when it comes to their growing baby. They are the ones who instill hope or fear. They are the ones who can be helpful or hurtful. They are the ones who are supposed to provide information and resources. This doctor’s email was, quite frankly, disheartening and distasteful. I can’t wait for the day when a positive diagnosis of Down syndrome is delivered with positivity and encouragement. I hope your news, whether positive or negative for Down syndrome, is presented as good news, with many congratulations because you are having a baby!
Everyone else: when we respond to the news our loved ones share with us, we need to do better.
Uplifting news shouldn’t be centered on the absence of disability.
When the “Today Show” aired the clip of Shawn Johnson celebrating her baby does not have Down syndrome, I happened to be watching the video with my brother in the same room. As soon as they said the words, “Down syndrome,” I all too quickly paused the video and looked over to him to see if it had peaked his interest. I am thankful he didn’t take notice (at least not that I could see), because he didn’t deserve to hear the reality of other parents rejoicing in the fact that their child is not like him. But what if he had been listening? For the sake of the other, our words and our actions need not be so careless.
To be better on all sides of the situation, we must first recognize some very fundamental misconceptions about disability that I believe we can all work to change:
1. Disability is synonymous with unhealthy.
Shawn Johnson shared the following, “every parent out there prays and hopes; you hope for a healthy baby.” Yes, this is true. I cannot imagine any parents hoping and praying for medical complexities. However, this comment was stated not in regards to the medical complications their baby may have, but in conjunction with the possibility of Down syndrome. Children and adults with Down syndrome can be unhealthy, just like anyone else. And children and adults with Down syndrome can be healthy, just like anyone else. Down syndrome alone is not a predictor for a child’s health or quality of life. Down syndrome is a genetic condition, not a medical one, and I hope we don’t continue to get this wrong.
2. Down syndrome is outside of God’s design, and therefore, we should pray for a cure or negative diagnosis.
“Prayers answered,” is what the East-Johnson titled their video announcement. I do not believe God answered their prayer for their baby to be “healthy” and not have Down syndrome, because I don’t believe their baby had Down syndrome to begin with. Hear me out. From the get go, God created that baby. If he or she was to be born with Down syndrome, our humble prayers would not change anything in God’s greater design. Under that logic if a baby is born with Down syndrome, it means God did not answer prayers or didn’t find favor on those praying, another grossly problematic misconception. God doesn’t take away Down syndrome, because it is not something that needs to be taken away. You with me? This is simply my two cents and is perhaps an unpopular opinion, but I honest to goodness see nothing negative about a Down syndrome diagnosis in and of itself. Call me irrational. Maybe God’s best is, in fact, Down syndrome.
3. Down syndrome is not something to be celebrated.
I understand that whether a diagnosis is given prenatally or at birth, there are a lot of difficult emotions that come with it. I can’t say I’ve experienced it because my son was not born to me, and neither was my brother, but I know there is grief involved in the loss of the child you thought you’d receive. You are confronted with a lot of overwhelming what if’s and why me’s. I get it. However, that does not mean a child given any diagnosis of disability does not deserve the same celebration as that given to an intellectually or developmentally typical child. Let’s honor each life placed in front of us, because each is a life worth celebrating. Dare I say, especially those who don’t receive those celebrations as often.
Parents waiting on results from genetic testing, know this: your child is worth grand celebrations simply because they are yours. Should the anticipated results come back positive for Down syndrome — feel what you must, but know that you have been blessed. Brush off the “I’m sorrys,” and bring out the trumpets. Babies with Down syndrome are worth celebrating!