Today I saw an article that brought back a memory. It was from the Daily Skimm and originally appeared on Good Morning America: https://abcnews.go.com/GMA/Wellness/fda-issues-warning-false-results-prenatal-genetic-screening/story?id=84187322 Basically, the article was about how genetic screenings can produce false positive results, possibly scaring the parents into making decisions they don’t need to make. This is the memory that came back:
I was 33 the year I was pregnant with my middle child, my daughter Heidi. I was completely flummoxed when my obstetrical practice told me I was considered “high risk”. I was almost five months pregnant when they wanted to do a screening test to see if the baby might have spina bifida. I agreed to it, thinking this way my husband and I would be prepared for any difficulties at birth.
It came back a false positive. Now I was counseled to go have an ultrasound so that Rich and I could make an “informed decision.” Rich had been going to Johns Hopkins in Baltimore since receiving a diagnosis of congestive heart failure due to Marfan Syndrome, and that's where we decided to go.
I called Hopkins to make the appointment, well aware of what was implied by “informed decision.” The scheduler wanted to bring me in right away and I said no. She said, “But you need to come in soon. You can’t delay.” I assured her there was no hurry and asked to be scheduled when I was almost 7 months pregnant.
She protested again. “But that’s too late.”
“No, it’s not,” I answered. “I don’t want an abortion.” The history on that: during my first pregnancy, we had a scare. Afraid that I might lose the baby because I was bleeding, I had an ultrasound. At the time I was about six or eight weeks pregnant. On the screen, I saw the tiny fetus and then was startled to see pulsing. I asked what it was and the tech said, “That’s your baby’s heart beating.”
Rich and I had both discussed the false positive and decided we wanted this baby in spite of any possible disabilities. After all, the baby might also have Marfan or might be deaf. Well, that didn’t sit well. The scheduler asked if I wanted to speak to a genetic counselor and I said, “NO.”
But what if the baby was born with spina bifida, with the spinal cord protruding and other scenes of horror? She scared me, but I said, if that’s the case, there will be doctors right there to help the baby. I was a nervous wreck and cried and cried when I finally got the appointment I wanted.
I went for the ultrasound, still a complete wreck, and accompanied by Rich, who was totally supportive and reassuring. We decided after all the hell we were going through, we deserved to know if our baby was a boy or a girl. We’d been going round and round on boys’ names but had easily decided on a girl’s, Heidi Marie.
We had to wait several weeks for the results. There were two pieces of wonderful news:
1. The baby did NOT have spina bifida at all. The screener brought back a FALSE positive
2. The baby was a girl!
How we celebrated, especially that we didn’t allow any of the medical professionals to influence our “informed decision.”
If you are expecting and have one of these tests, don’t be alarmed if a screening test comes back positive. That will happen almost all the time. An ultrasound will tell what to expect and then you must make your own “informed decision.” No judgements from me on what that would be. I have my beliefs, every woman has her own.
I was 36 when I became pregnant with my youngest child. Once again, there was that “high risk category” beating of the drum. This time, however, I said no to the recommended spina bifida screening. My midwife supported me while the doctors at the practice wrung their hands.
My youngest, my daughter Kristin, was perfectly healthy too.
By the way, none of the three have Marfan and they all hear perfectly well.
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