Down syndrome & National Pregnancy and Infant Loss Month

October, it turns out, is a month devoted to raising awareness about many things. In addition to being Down syndrome awareness month, it is also National Pregnancy and Infant Loss Month. Here’s where the two overlap.

When pregnant with a child with Down syndrome, there is a significant likelihood that the pregnancy will miscarry. There are few published studies establishing those percentages, but the ones that I am aware of have put the chance for miscarriage at about 50% in the first trimester and 40% in the second trimester. This means that if you started with 10 pregnancies positive for Down syndrome, 5 would miscarry in the first trimester and, of the remaining 5, 2 would miscarry in the second trimester. Meaning, that out of 10 pregnancies, only 3 would make it to full-term.

This reality of pregnancy loss was brought home to me when I served as a reviewer for the book, Diagnosis to Delivery. The book compassionately addresses the experience following a prenatal diagnosis of knowing that the pregnancy is now at an increased chance for miscarriage. I think it very difficult for many to appreciate that dynamic. Imagine being pregnant, finding out prenatally that your child will have Down syndrome, and continuing your pregnancy knowing that now the pregnancy may miscarry.

Further, and sadly, there is a relationship between Down syndrome and infant loss. Commonly the quoted statistics are that about 50% of babies with Down syndrome will have a heart condition and of those, half will need some form of medical intervention, usually surgery, to repair their heart. Fortunately, the success rate for heart surgeries on children with Down syndrome is 90% and climbing. But that still leaves a small percentage of children with Down syndrome who have heart conditions that are not successfully repaired and many of those pass away in the first year of life.

As a parent and board member of my local organization, I have gotten to know our families whose children are medically fragile. I have sat at our potluck dinners and interacted with a child hooked up to a device to help her breathe and watched at how her eyes lit up when we would say her name. I have visited them in the hospital while their child is recovering from open heart surgery and seen them gaze over at their parents while their little bodies struggle to heal themselves. And, I have attended their visitations and funerals and seen the line of friends and family members waiting to hug and console the parents and siblings.

And, then, I have marveled at these same families when they join us at our annual walk, with teams that raise thousands of dollars in honor of their loved ones who passed away.

There are those who are aware of these experiences and think they all justify the reasons for prenatal testing. They allow parents to know of their child’s condition early on and give them the opportunity to avoid having their child live a short life and die from unsuccessful surgery. But, in light of the overlapping awareness this month for Down syndrome and pregnancy and infant loss, a couple of points to keep in mind:

• No prenatal genetic test informs the parents whether their child will need intensive surgical intervention. Prenatal genetic testing simply informs how many chromosomes the fetus has. Only through ultrasound and fetal heart monitoring are these potentially life-threatening conditions revealed.

And

• I have yet to meet a parent who says they would have chosen not to have had the brief time they had with their child with Down syndrome. Rather, the families I know continually honor the memory of their child and treasure the short time they had with their loved one.

UPDATE: The National Center for Prenatal & Postnatal Down Syndrome Resources has published, Coping with loss, a digital book to support families who have lost their loved one with Down syndrome. From the website:

The book offers support to families who have experienced a miscarriage or lost a baby or child with Down syndrome by covering topics like coping with grief; dealing with comments and the practicalities of loss; helping siblings cope; and finding resources. This book also features the stories and photos of families who have experienced loss and who provide their personal insight.

I served as a reviewer for the book and gained insight on the thoughts and feelings families experience with the loss of their child. A free copy of the book can be downloaded at this link. Please do so if it can help you or a family you know that is coping with the loss of a child with Down syndrome.