Stories of Prenatal Diagnosis: K. F.
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 “K. F.“
What conditions did your screening results indicate?
Spina Bifida MMC, Chiari Malformation Type 2, and Hydrocephalus.
Did it turn out to be the case that your child had these conditions?
Yes.
Please tell your story of your experience in your own words.
We found out my daughter had spina bifida after an irregular anatomy scan. What I know now is that the tech saw my daughter’s Chiari Malformation and stopped the scan to get the OB to refer me to a specialist. It was 6 days later in the MFM’s office that we were told my daughter had spina bifida mmc and a Chiari Malformation. At that point they referred me further to Cincinnati Children’s Hospital.
What aspects, if any, did you like about the way your medical team handled the situation?
I liked that I was referred to the best team to handle our situation. I like how closely the medical team knew our case. Even as far as knowing the name I had picked for my child and calling her by name. It meant a lot to me.
What aspects, if any, did you dislike about the way your medical team handled the situation?
I didn’t like that my OB or the tech that saw the Chiari malformation didn’t tell me what they saw.
What recommendations do you have for medical providers who are giving parents prenatal screening results?
I think it’s best to be direct and to explain the condition in as simple terms as possible. It’s also good to be clear about things that are unknown. I also really appreciated being allowed to sit in the office and cry for as long as I wanted before I left.
What recommendations do you have for parents who are receiving prenatal screening results?
Diagnosis day is the hardest. It will get easier.
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