Stories of Prenatal Diagnosis: Caroline H.
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 Caroline H.
What conditions did your screening results indicate?
Loeys-Dietz.
Did it turn out to be the case that your child had these conditions?
Post-natal testing has indicated that one of my children has the condition and the other does not.
Please tell your story of your experience in your own words.
I am not exactly the story you’re looking for because I did not get a prenatal diagnosis because I chose not to get testing done. I have a genetic connective tissue disorder and was warned that there was a 50/50 chance any of my children could carry this condition and was offered testing so that we could respond if the baby has it.
I’m horrified that they would test for this condition because it is not debilitating. I first was impacted by it when I was 24 and had a stroke and was not diagnosed with the condition until I was 32, after a second vertebral artery dissection. I live a meaningful, fulfilling life. Perhaps the most debilitating element is not knowing when another dissection/stroke/aneurysm could occur and the resulting anxiety but it also causes me to try to live as though every day could be my last.
I feel that to tell me I should test my baby for this condition so I can abort any baby with the condition is the ultimate slap in my face, as though telling me I shouldn’t be here and that there’s no value to a life with this condition.
What aspects, if any, did you like about the way your medical team handled the situation?
They gave a referral for cord blood testing so we could test immediately after birth rather than in utero. Cord blood testing was also going to be much easier on the baby than taking the baby’s blood at a later point in their life.
What aspects, if any, did you dislike about the way your medical team handled the situation?
The insinuation that we might not want to carry through with a pregnancy of a child carrying the condition. One of my sisters was even told she should consider not having more biological children to prevent bringing forth children with the condition. She has had no negative effects of the condition but her first son had early skull fusion, which is why they tested her and him for the condition as well.
What recommendations do you have for medical providers who are giving parents prenatal screening results?
Don’t devalue the person(s) with a diagnosis by indicating they should not be here, or that their life has less value.
What recommendations do you have for parents who are receiving prenatal screening results?
Be resolved ahead of time that the results do not change how much you love your child and you are getting testing only so you can be better equipped to face any challenges that may come with this child. I chose not to get prenatal testing because I did not want to face pressure to abort and a diagnosis in utero was not going to help prepare me to care for this child; a post-natal diagnosis was sufficient.
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