“How’s your son?” I asked her over the phone, after I answered her questions.
“He was diagnosed with Down Syndrome, right?” I remember seeing her postpartum, standing by the warmer in the NICU. She had declined prenatal testing because it wouldn’t have changed how she felt about the pregnancy. When her baby was born, the pediatricians thought he had several characteristics of a baby with Down Syndrome, so he was in the NICU for evaluation. She was a bit unbelieving at first, not ready to fully accept the diagnosis until the test results were in. I knew they’d both be fine. She came from a lovely extended family that took care of each other. That baby was lucky, I had thought. No one rejoices at the diagnosis of Down Syndrome, but I knew that baby was going to be loved on so much.
“Did you know, I had a baby with Down Syndrome? She didn’t make it though.” I was able to say the words easily.
“Oh no! I’m so sorry! You were able to make it to term?”
“Yeah- thirty-six weeks. She was born in February.”
“Oh no, what happened?”
I explained that we knew she had Down Syndrome since 13 weeks but continued on. I told her about the kidney problems and the low fluid making her lungs underdeveloped. Ultimately she died because her lungs were too small. She told me how sorry she was and that she’d pray for me. She marveled at how she felt like she’s hearing about so many more people having babies with Down Syndrome. I told her I thought a lot about her and her son throughout my pregnancy. The emotions I had in the beginning- grieving the diagnosis at first- and then the preparations I did. I told her how amazed I was that she did all that while having a brand new baby.
“How is your son?” I asked, knowing that 50% of children with Down Syndrome have heart defects and many have other birth defects and later health problems.
“He’s good! He’s got nothing major- just low muscle tone. He’s teaching himself to crawl,” she described her one year-old’s slightly delayed progress.
I asked who her pediatrician was. “Is he in Birth to Three?” referring to the early childhood support program in our state.
“Yup! They have therapists that go to the day care and to the home.”
I told her about the Down Syndrome Comprehensive Clinic, and she took the information eagerly. I told her I was glad her son was doing so well. She thanked me and said she’d be keeping me in her prayers.
I felt good about it all. We shared something special. I wish I could have been the woman on the other end of the phone- the one whose baby lived- but I nonetheless felt good.