It’s no secret that when women receive a diagnosis of Down syndrome, it’s often delivered in a negative way. The Down Syndrome Diagnosis Network (DSDN) was founded to combat this problem. The mission of DSDN is to connect, support and provide accurate information to families with a Down syndrome diagnosis, with a long-term goal of creating a world where all families would have unbiased, family-centered diagnosis experiences with up-to-date information and access to support and connections.
Unfortunately, most women don’t receive unbiased diagnosis experiences. They’re given outdated, inaccurate information. According to DSDN, only 11% of women who receive a prenatal Down syndrome diagnosis say the experience was a positive one, and there’s a good reason why: doctors simply aren’t being trained. One study found that 40% of junior fellows said their training for a prenatal Down syndrome diagnosis was “barely adequate or nonexistent.” In a survey, only 63 percent of doctors said they tried to be unbiased, while 13 percent of doctors said they would emphasize the negative aspects of Down syndrome so parents would choose abortion.
DSDN tries to change this in a variety of ways: promoting the nationally recognized guidelines on how to deliver a Down syndrome diagnosis, offering a physician feedback program, which allows parents to write their doctors anonymously about their diagnosis experience (good or bad), and resources for medical professionals.
Their latest effort to change how women receive a Down syndrome diagnosis was launched this month, in honor of Down Syndrome Awareness Month, and it’s called the #DearDoctor campaign. Throughout the month, women will have their #DearDoctor letters published, where they tell the medical professional who delivered the news how it affected them.
Some of the stories are good. Heather Bradley, DSDN president, wrote to her labor and delivery nurse. “When my husband asked for a third time while I was holding her, you gently told us that our daughter WAS showing some signs of Down syndrome even though you weren’t supposed to be the one to deliver the news,” Bradley wrote. “Thank you for not expressing an opinion about Down syndrome. You didn’t start by saying ‘I’m sorry’. You didn’t show pity or sadness. Your strength and the unbiased way you delivered the news enabled us to be strong during a time of much inner turmoil.” Tiffany Stafford wrote that her doctor “congratulated us and told us our daughter was beautiful.” Erin Statz recounted how she had gone into labor early, and the nurse showed her incredible kindness. “‘What a beautiful baby boy, he’s perfect and he’s the most beautiful baby I have ever seen,’ are the words you said at least once to me during his first few hours of his birth,” Statz wrote. “And you were right, he did turn out to be perfect. Your kindness will always be remembered.”
Unfortunately, many more of the stories are negative. Cathleen Small, secretary for DSDN, wrote how her doctor cruelly broke the news while she was still lying on an operating table for her c-section, open and vulnerable. “My husband was across the room, talking to someone else in scrubs. I was alone when you came up and brusquely announced, ‘I need to tell you something because you’re scheduled to have your tubes tied. Your baby has some issues of tone that concern me… some markers for Down syndrome. Are you sure you want to have your tubes tied?'” she recounted. “My eyes filled with tears when I said as firmly as I could, ‘Can you please repeat that with my husband here?’ I couldn’t believe you were telling me that while I was alone—and I couldn’t believe you sounded so negative. Your tone said to me: ‘This baby isn’t right. Are you sure you don’t want to leave your tubes intact and try again?’ I was angry and I was hurt. I hadn’t even seen my baby yet!”
Kathleen Simpkins wrote about how her GP referred to her baby as an ‘it’ and said she was better off dead. Natalie Palin said that while she doesn’t remember her doctor’s name, she’ll never forget their words. “[Y]ou turned to me and said, ‘I hope I am wrong, but your son is exhibiting several markers for Trisomy 21 or Down syndrome,'” she wrote. “[B]y sharing your observations in the way you did, you robbed us of something we can never get back. We will never have that moment where we looked at our son with the pure amazement all new parents should have the opportunity to feel.” Sara Madonna, who serves on the DSDN advisory board, wrote, “I remember what you didn’t say. You never once said, ‘congratulations’. Even though my husband and I were both visibly very upset, we still had just welcomed our little boy into the world, and when someone has a baby, you say congratulations. Instead, you made the birth of our child feel like a tragedy.” Lauren Ochalek, also on the DSDN advisory board, said that her doctor told her that her daughter would be a vegetable. “Really?” she wrote. “Who does that?”
DSDN will continue publishing #DearDoctor letters throughout the month of October (including the one I wrote to my doctor). Receiving a diagnosis of Down syndrome is not ever going to be easy — it is life-changing, earth-shattering. But that doesn’t mean that a doctor or medical professional does not still have a duty to be kind and compassionate, to know the latest information about Down syndrome rather than pushing misinformation, and offer resources for new parents. Doctors should never use their personal biases to pressure women into abortion or denying medical treatment for their babies.
What will these doctors think when they look back on their words? Some of them can be proud and know that they made a profoundly positive difference in someone’s life; others will hopefully be ashamed, and resolve to do better moving forward. But giving these women a voice is the first step in making a difference.