I could not sleep last night. And it wasn’t because of the kids. It was because I was and am deeply troubled. It’s not the first time, and sadly it won’t be the last. I cried in the car after I dropped Rachel off from school thinking about it. And when you feel mental and emotional unrest about something, eventually you need to do something. So today, I am doing something. It’s not much. But here it goes.
Yesterday, I became aware of another local prenatal Down syndrome diagnosis story. I hear these a lot, obviously, as I am involved in our local parent advocacy group and GiGi’s Playhouse Annapolis. Stories from years past and present. Stories that so very often mirror my own experience. The same phone call from the doctor’s office: “your baby has/most likely has Down syndrome.” And almost as quickly, the question: termination or continuing the pregnancy. In my case, I was asked by the provider IMMEDIATELY after the diagnosis statement, “what are your plans for termination?” Plans for termination. My son’s life was just assumed to be unwanted and worthy of throwing away. Can you imagine how that feels? And imagine hearing from so many women the same kind of story.
Doctors, it’s time. It is time for a better diagnosis. This is not a pro-life or pro-choice argument. This is simply about QUALITY OF CARE. This is about being PRO-INFORMATION, providing information that is up to date, based on evidence. This is about providing patients with resources, maybe a little reassurance, and maybe, just maybe, a little bit of hope. I’m not electing to remove the choices. Regardless of how I personally feel about abortion, the reality is that we live in a country where you are supposed to be given a choice. An informed choice. The American College of Obstetrics and Gynecology has practice guidelines regarding recommendations for prenatal testing. You can view some of them here:
https://www.google.com/amp/s/prenatalinformation.org/2016/04/29/acog-issues-new-prenatal-testing-guidelines/amp/
What I find alarming is this statement regarding post-diagnosis counseling: “Referral to parent support groups, counselors, social workers, and clergy may provide additional information and support for some parents.” All parents should be offered access to other parents. And not on some social media group. In person, a phone number, a website. There are a plethora of resources, both local and national. Organizations whose entire mission is to improve the diagnosis experience of parents and connect them with other parents, whether they plan to terminate or not. I get it - some people hear Down syndrome and run for the hills. But I have to believe that the abortion rate of Ds pregnancies in this country which is estimated recently to be around 67% might be less if people really knew what having a child with Down syndrome is truly like. If they knew that research shows that families with children with Down syndrome report that they are very happy, including siblings, and that people with Down syndrome report that they are happy with their lives, would it matter? If they knew that research and early intervention for children with Down syndrome is bountiful, that the life expectancy, potential for education and work and independence and marriage is a real part of life for a person with Down syndrome today, would it matter? I have to believe the answer is yes. Otherwise, I wouldn’t be working so SO hard to advocate like this. But it starts in the Doctors Office.
Doctors, I am a medical professional. I have nothing but reverence for you. I have been in those conversations with patients: you have Parkinson’s disease; you have Alzheimer’s disease; you have spinal cord injury; you have cancer. Being a medical provider is extremely hard, and I am in no way vilifying the obstetrical community. I understand that what you say and what a patient hears are not always exactly the same thing. My doctors that took care of me while I was pregnant with Mark were amazing. They prayed with me in the office. They encouraged me to reach out to the parent group that I am now a part of (although I was not actually given a person or point of contact.) But this was after I made my choice, after I ignored what that doctor said when she threw Mark’s life away before she even gave me an option to keep him.
This is Mark. The Mark I knew when I was pregnant. The maybe medically complex, maybe going to be still born, maybe never going to be happy, maybe going to have a hard life Mark. Pictures. An imaginary person and imaginary life. This is the Mark I know now. The Mark I knew when I held his living, breathing, pink little body in my arms in a hospital in Baltimore. The Mark who walks and talks and brings joy to every single person who meets him. This is my real life. Yes, I have different concerns than you do with your healthy, typical kids. But, overall, they are largely the same concerns, the same dreams, the same kind of love.
Dear Doctor, this is Mark. We are the Bakers. We are happy. We are grateful. We are living our dreams and making new ones. There is so much hope today. Let’s give people the appropriate information and resources from the get go. From the phone call. It starts in your office. It starts with you.
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