As a midwife pregnant with a child with Down Syndrome, I am privileged to have both given and received a Down Syndrome diagnosis.
I remember her birth story- it was her first, they were teachers. She was 36weeks, just a hair shy of term and the baby came fast. They had declined testing. After the baby was born into my hands I lay her right up on her mother’s belly, skin to skin, to cheers and tears of delight from her parents. As the nurse dried the baby off on mom’s belly, she looked at me whispering something. It took a few beats for me to realize she was saying that the baby looked like “a downs baby.” Since baby was fine, she stayed on mom for a bit, as the family oohed and aahed over her. Whose eyes she had, which family chin she inherited. She was beautiful and the parents loved her unconditionally. And then we called the pediatricians to check her out- mostly under the guise that she was technically preterm. I don’t think either of us felt qualified to inform the parents of our suspicion. The pediatricians did an exam and one came over and started going over the baby’s features. I remember her stammering and I think she mentioned Down Syndrome somewhere in her talking. It was awkward. After they left, I sat down with the mom, who just looked confused, in shock. I had a feeling she didn’t absorb any of it. She needed more. I told her in simple words without the medical jargon of single palmar creases and flattened nasal bridge, that they think her baby has Down Syndrome. She was a little unbelieving at the time- but she heard it. I remember I was positive- we still talked about who she looked like and how fine she was. Dad was more immediately accepting of the diagnosis. Baby had to go to the nursery for a sugar check because mom had gestational diabetes, so dad went with her. When he came back, I caught him in the hallway. Mom had had a lot of attention, but dad had been whisked away during those moments- so I stopped him and asked him how he was doing. He said “So she has Down Syndrome- but she’s still our baby.” He was just so loving and immediately accepting.
Now that I have been given the same diagnosis, I think I know what went through that mom’s mind in those first moments. My diagnosis went from “there’s a 1/3 chance of some sort of major birth defect or chromosomal abnormality” based on the first trimester screen to “it’s Down Syndrome” based on the CVS results. I had a weekend to think about all the possible outcomes- mostly I focused on trisomy 18 (my biggest fear) and Down Syndrome. I didn’t think this baby was chromosomally normal (is that even the right term?). I had seen too many results from those first trimester screens to know 1:3 does not bode well. In a way I was hoping for Down Syndrome, because my baby had a better chance of living. So when my midwife called my Monday afternoon in the middle of my work day and she said “It’s Down Syndrome,” I actually was relieved. I didn’t cry. I said “ok….ok… Ok. I can do this.” My midwife was great. She was nonjudgmental. She knew me. We had talked for a long time after the abnormal first trimester screen. So she knew my thoughts and fears about all the possible diagnoses. She asked what I wanted to do. I told her I wanted to continue on- my husband and I had talked about it- which at the time was all theoretical, but in my new reality, continuing on was my first instinct. She went on to talk about all the positive things I would experience. “Babies with Down Syndrome are born without malice.” I would still experience all the joys of pregnancy.
In comparing my experience with my patient’s, I feel lucky. I have so much more time to adjust. I am grieving. I am seeking information. I am angry. I am worried. But I get to do this on my own time. When I finally get to meet this baby, I can welcome him/her without feelings of loss. The birth will be nothing but celebration. I can’t imagine having to process all this and adjust to a newborn all at the same time. My tradeoff is the worry I feel through the pregnancy. I would have had a much more carefree pregnancy if I chose not to do testing. But my birth will be even more joyful than I could ever have imagined.
I have had the pleasure of attending my patient’s third birth as well as her first. She chose not to do testing during the pregnancy. And she was nervous- in a way I thought I understood before, but really understand now. She just wanted to meet this baby and make sure she was ok. She wasn’t in full blown labor, but I admitted her and broke her bag of water to get things going. I could see the relief on her face, when she knew I was going to help her meet her baby that day. And it was wonderful. Baby joined us after a fast labor and was just fine. Her relief holding her in her arms and knowing she was ok, was immense. I look forward to that feeling with my baby.