Florida mom Courtney Baker and her daughter Emersyn have thrust Down syndrome into the national spotlight, specifically addressing the need for physicians to provide support to parents choosing to carry a baby to term once it has been diagnosed with Trisomy 21.
I have also read responses to Courtney from the medical community stating the importance of offering all options when delivering a Down syndrome diagnosis. It’s true, doctors can’t only tell you what you want to hear; to be ethical they need to let you know about both sides of the diagnosis and all available options.
What I think we do need to remind our doctors (and parents of kids with Down syndrome) is this:
Our kids are freaking rockstars.
It is estimated that 90-92% of children prenatally diagnosed are aborted. If a mother chooses to keep her pregnancy in light of a Down syndrome diagnosis, that still doesn’t mean she will have a child with Down syndrome.
Anecdotally, I have read and heard that there is a 50% chance of miscarrying a baby with Down syndrome in the first trimester; a 40% chance of miscarriage in the second trimester. A study completed in 2006 found the average rate of fetal loss from CVS diagnosis to term was 32%.
A child with Down syndrome has a better chance of being aborted or miscarried than surviving.
If a child with Down syndrome is carried to term, they have almost a 50% chance of having a congenital heart defect (children without Down syndrome has a .08% risk of one of these defects). Most of these defects require heart surgery. And guess what? Our kids have a better chance of survival than those without Down syndrome.
Why am I delivering all these rather depressing statistics? To remind you that our beautiful babies are strong, mighty fighters. Isn’t it miraculous to know Elisa and her friends beat those odds? Even if they have a slew of medical and developmental challenges ahead, they are little miracles.
They are fighters. And while doctors are required to warn you about developmental delays and health issues, I hope they are also sharing with you that if the baby is strong enough to make it through pregnancy, they are resilient little people, teaching us important lessons along the way.
My Elisa’s diagnosis came as a surprise. We had opted out of prenatal testing and my pregnancy never indicated anything was wrong to prompt my physician to do any additional screening. For this reason, we were not aware of her diagnosis until after she was born. We were never sat in a room and told about all the things she would not do. We never had to consider our options and make a decision for our daughter. My husband and I opted out of testing because we knew we would carry our baby to term, regardless of any diagnosis. Had we faced her diagnosis prenatally, I am not sure how we would have felt or how my pregnancy would have been different. I cannot relate to mothers who had to carry that in their heart for nine months.
When Elisa was born and the nurse told us she suspected she had down syndrome, my whole world came to a crashing halt. Dr. Elena Rossi came into our lives when Elisa was less than an hour old and confirmed the nurse’s suspicions. “We do not have the genetic testing back yet, but I can say with good certainty that she has Down syndrome and it will be ok. You can do this. We will support you.” Her words are burned in my memory forever. Before she came in, I wasn’t sure what the future would hold for Elisa. Then this woman, a doctor, told me it would be different, but ok.
Elisa in the NICU, 3 days old
Dr. Rossi had an opportunity when she walked into our lives. She did not sugar coat the situation. She was direct and she was frank. But she was also supportive. Elisa was diagnosed with CHD a few hours later and spent eight days in the NICU. During those days, Dr. Rossi and her team were balanced practitioners- they were honest and direct, presented all our options, even those we may not have wanted to consider, and took great time and care to support us.
It makes me sad that Courtney didn’t have a Dr. Rossi to start her Down syndrome journey. It fills my heart with sadness to think of doctors pressuring their patients to abort a child with a Down syndrome diagnosis, or not supporting the choice to carry and raise their baby. This discussion is not about being pro-life or pro-choice. It is about the art of bedside manner and the importance of balanced medicine. Doctors have a responsibility to their patients to share all the facts. Yes, it is important to share the challenges ahead, but it is also critical to share all the progress that has been made medically and socially for the Down syndrome community.
If you have received a prenatal diagnosis of Down syndrome, regardless of your doctor’s ability to deliver the news, make sure you do some research and talk to parents and people with Down syndrome before making your decision. Reach out to local organizations or other medical professionals. Get perspective beyond your current one and your doctor’s. It’s important you have all the facts for yourself so you can make the best decision for you and your family. That is what is critical.
Questions about parenting a child with Down syndrome? Join our virtual village or reach out to us at firstname.lastname@example.org. We would be happy to share resources to address any questions you might have.