This isn't a post to scare new moms. This is a post to remind us of the babies who aren't physically present in our community, but should be.
I was grateful to have a very early diagnosis of Down syndrome for Ellie. I had seven months to emotionally prepare myself for having a child with special needs.
The early diagnosis has a downside, too, a downside of great fear. The rate of miscarriage and infant loss is higher for babies with Down syndrome than the typical population. October is also Pregnancy and Infant Loss Awareness Month.
Despite Ellie's surgeries and birth via emergency c-section, she is a healthy kid.
This is a post sharing what I've learned from moms in the community and what they wish they knew.
In my own experience, I was told that unlike the twelve week point for most pregnancies, I would have a dramatically reduced risk of miscarriage at twenty weeks. (From 20 percent down to 5 percent.) Matt and I went out to dinner to celebrate one weekend last fall, because Ellie made it to twenty weeks. From what I understand, the high risk of loss is associated with the health conditions more common in people with Down syndrome.
I realized in retrospect how lucky we were to have a prenatal diagnosis. Ellie's heart was constantly monitored during labor, and is the reason I had an emergency c-section. In Ellie's case, the monitoring likely made all the difference.
Kids with Down syndrome are at risk for pulmonary hypertension and persistent pulmonary hypertension of the newborn (PPHN). The advice I received from one mom was to ask about a worst-case scenario plan and put the plan in writing. The odds are favorable for kids with Down syndrome, but the risks are still higher than the general population. Sometimes, planning isn't enough.
One of the saddest things I've learned is how some moms are treated when they lose a child with Down syndrome. Many infant loss groups welcome individuals who have elected to terminate... including for Trisomy 21 (Down syndrome). That's not a welcoming environment for a mom who loved her baby with Down syndrome. Losing a child with Down syndrome isn't "less" than losing any other child.
So here's the message for today, specifically for those in the Down syndrome community. The odds are in our favor, but we've all found narrow odds before, because we have kids with Down syndrome. Hug your baby tighter, and reach out in love to those who don't have their babies here to hug. Talk to those mommies about their little ones, remember birthdays, and listen.