Stories of Prenatal Diagnosis: Anonymous
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 an anonymous parent.
What conditions did your screening results indicate?
Hypoplastic left heart syndrome
Did it turn out to be the case that your child had these conditions?
Yes, and a craniosynostosis that was not caught.
Please tell your story of your experience in your own words.
We have generally refused early indication screenings (NIPT, for example) because the results would not change our determination about the pregnancy. Having the “maybes” would be more stressful than an actual diagnosis down the line when something relevant is available.
However we have one child with a serious heart condition that was detected on his anatomy scan and diagnosed after specialist follow up. Preparation for his birth and his treatment was so surreal and stressful that my husband and I came away from the experience with very different memories of that first conversation.
We shut down the abortion offer right off the bat, and I remember that being that. We lived in an area where it is legally required to be offered in the face of a serious diagnosis, I said no, and thought nothing more of it. My husband remembers the issue being raised two more times in that conversation, and it has soured his interactions with the medical community ever since. He has been much less trusting of medical care providers since that experience. (Our son is a thriving toddler, BTW. We can’t imagine our family without him.)
What aspects, if any, did you like about the way your medical team handled the situation?
I felt very supported by our nurse case manager, and appreciated the loving care for our son given by his lead surgeon who was a very warm person.
What aspects, if any, did you dislike about the way your medical team handled the situation?
My husband felt pressured for us to terminate the pregnancy, which was not going to happen, period, end of sentence. We were aware that he might not survive his first heart surgery at five days old, and determined that he would know at least five days of the love of his family.
What recommendations do you have for medical providers who are giving parents prenatal screening results?
There are times when it is wise to refrain from giving advice even if it is asked for, and major life decisions, IMHO, are one of those. You may have an opinion about what they should do, but unless there is a major emergency at hand, this is not the time to share it. Walk them through the possibilities and encourage them to process before making a life-altering decision. This protects the person from external pressure in any direction, and you from guilt or accusation if their feelings change after the shock wears off. (Providers who offer solutions without it being asked for may have a different thing to contend with… “if your opinion isn’t asked for, it probably isn’t wanted.”)
What recommendations do you have for parents who are receiving prenatal screening results?
It’s okay—it was even helpful for me—to entertain worst case scenarios. “What would happen if…?” isn’t an omen or a bad wish upon your outcome; it’s a coping strategy for possible outcomes. And no one can tell you how things will turn out; they can only give you projected possibilities based on how things have turned out for the people ahead of you in line and the treatment options that are available.
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