Last night my friend Tracy Winsor emailed me to ask permission to reprint a column I’d written a few years ago about prenatal diagnosis of Down Syndrome. I had to email her back giving her permission but admitting that I absolutely could not remember what piece of writing she was talking about 🙂 Chemo brain is bad, bad, bad. I assume she wants it for a conference she’s putting together…
So this morning, she emailed me a copy. I couldn’t open it. Like I said, chemobrain is bad. So I asked her to copy and paste it into an email so that I could read whatever it was that I wrote. I felt quite guilty… she is, I think, just about the busiest person I know. Homeschooling mom, six boys, but working more than full time with this ministry as well as personally providing care and support to women chosing to carry to term despite poor prenatal diagnosis. Of course she sent me a copy, right there in the email, and I immediately remembered writing it… but it WAS a long time ago… pre-cancer even… so I thought I should put it up here in case I needed to find it again sometime 🙂
Poor Prenatal Diagnosis
Elizabeth S. DeHority, MD
This morning, I sat at Mass with my family. I was a bit distracted by my six month old, George, who was trying to get my husband’s attention with his newest tricks…grabbing noses, blowing bubbles, trying to sing (or at least that’s what we call it…) When George does all those regular baby things, we rejoice more than we did with his older siblings because George has Down Syndrome. After the doom and gloom prognosis we were given for him, it’s wonderful as we realize each day that he’s overwhelmingly more LIKE his siblings than different from them.
But anyway, I sat in Mass today wondering where all the other babies with Downs are. Last week we were at a violin concert, and there was a happy, busy four year old with Downs sitting behind us, anxious for the concert to be over so that he could resume our conversation about going to kindergarten. In May, I was at an education conference, and at one point there were three other babies with Downs in one room while I was there with George.
So where are the babies with Down Syndrome at my church? There’s a wonderful young man, Nathan, who has Downs. He was in my Sunday school class several years ago, but he’s on his way to middle school now. In my eleven years of working with every First Communicant at our parish, he’s been the only child to celebrate that precious sacrament. Nobody I’ve asked has been able to think of a Downs baby baptized at our church in the past few years, other than our George. I can’t think of any reason that Catholic moms wouldn’t conceive just as many babies with an extra chromosome as the rest of the world’s women…so where are the babies?
90 % of all babies diagnosed with Downs prenatally are aborted. From personal experience, I can tell you that the obstetrical care system is a strong force, and truly a challenge for even the most passionately pro-life families. It starts with early prenatal care and screening which is valuable and positive for many reasons, but as soon as there is even a remote possibility of a fetal problem all the relationships change. It’s called Poor Prenatal Diagnosis – or PPD. When obstetricians provide a PPD, the system goes from one geared towards investing in the health of mother and baby into a fast-paced, frightening, very negative organization.
When our family learned that our baby probably had Down Syndrome, we made it absolutely clear to everyone that we would keep our son. We had lost a baby a few years ago to complications from amniocentesis so we refused that too. I was, however, amazed at how much time and effort it took to go against the flow. Why would these professional make life more difficult for a family struggling with a PPD? Why wouldn’t they be supportive of a family carrying to term? Things got more difficult when we had additional pregnancy complications that required a specialist. Finding a maternal fetal medicine doctor willing to help us bring our George into the world in as healthy a state as possible required so much time and grief.
We managed to resist the force, and we kept George. He was premature, and he has Downs, and he brings joy to our family. But do you remember Newtons’ Third Law from high school physics? “Every force has an equal and opposing force?” Well, maybe there aren’t any other babies with Downs in my church because the force of the fast-paced, frightening, non-pro-life obstetrical industry isn’t being met with much of anything to oppose it.
How can we create a force, equal in speed, strength and power to that of the medical system which could support families dealing with bad news about their baby? Our force must be positive, peaceful, honest, and gentle. Families in this situation are so vulnerable. It must be visible and immediately available. Often medical things happen so fast that if parents don’t know about supportive options ahead of time, it might be too late. And finally, our effort to support these families must be fully integrated into a culture of respect for life, no matter how brief, no matter how handicapped, in every aspect of our faith community.
PS… to Mrs. Foss
… I really, truly do have photos from the knitting date with Ann V.
… we brought Sam along as our official luggage carrier, George entertainer and knitting photographer. I’ll put them up as soon as this particular chemobrain flareup gets a little better 🙂