Stories of Prenatal Diagnosis: S. W.

A prenatal diagnosis is often accompanied by the pressure to abort, leaving most parents feeling unsupported by the medical community and society at large. In our series “Stories of Prenatal Diagnosis,” we share testimonies of parents who received a diagnosis while pregnant and their personal experience in handling it. Today’s story is from “S.W.”

If you are interested in sharing your experience with prenatal screening, please complete this survey.

What conditions did your screening results indicate?

Any abnormality was possible, but the most likely ones were Down Syndrome and other non-fatal issues. I had already had a high-resolution ultrasound at 13 weeks due to being age 41, and that one had showed no problems whatsoever.

Did it turn out to be the case that your child had these conditions?

By all indications, our beautiful daughter does not have any abnormalities – we are waiting for the confirmatory test results. She is hitting all of her developmental milestones like clockwork at 3 months old.

Please tell your story of your experience in your own words. 

I got a “low fetal fraction” result twice on my cell-free DNA test with my younger daughter. The results said “fetal aneuploidy” was possible, which my doctor explained means genetic abnormalities. I was referred to a genetic counselor and had my ultrasound moved to an earlier date so any obvious problems could be discovered as early as possible. I live in an abortion-friendly state, so I’m assuming I could have had one at the gestational age at which the ultrasound was done.

What aspects, if any, did you like about the way your medical team handled the situation?

They were very quick to answer all of my questions. When my second DNA test came back with the low fetal fraction result, I was immediately scheduled with a genetic counselor. She explained all of my diagnostic options, along with the pros and cons of each one, very clearly. And even though I am located in a very pro-abortion state, she never mentioned abortion as an option.

What aspects, if any, did you dislike about the way your medical team handled the situation?

I wish they had given me a more thorough explanation about why I could not have an extra ultrasound at 17 weeks, when the second DNA test came back, or at least move up my 22-week ultrasound. They just said it was “not indicated;” I wish they had taken the time to explain that 1. waiting until at least 20 weeks meant the images would be much clearer and more definitive and 2. my insurance would not cover an extra ultrasound. Also, I had to push pretty hard to get my ultrasound moved to 20 weeks so I wouldn’t have to deal with the uncertainty and anxiety for over a month.

Full disclosure: I was offered an amniocentesis, for which I wouldn’t have had to wait as long, but I decided the risk to my baby was too high.

What recommendations do you have for medical providers who are giving parents prenatal screening results?

Take the time to listen to your patient and answer her questions calmly and thoroughly. She’s hungry for information, so give her what she needs without overwhelming her. And please NEVER advise her to get an abortion while you’re delivering the test results! I can’t bear to think of how devastating that would have been to me – I was just starting to feel my daughter’s kicks, and the last thing I would have done was to brutally stop them forever.

What recommendations do you have for parents who are receiving prenatal screening results?

Ask all the questions you can! Even if you’re too overwhelmed to ask at the moment of diagnosis, don’t be afraid to message or call your provider later on, when you’ve had a chance to assemble a list of things you want to know. What are your options? What are the risks and benefits of each one? Are there any outside-the-box (but still medically tested) alternatives available? Does your provider know of any local or national support groups for parents in your situation and/or parents and children with your unborn child’s diagnosed disability? Your provider is there to help you give your child the best life possible. Don’t be afraid to go to another doctor if your provider isn’t helping you reach that goal.

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