Stories of Prenatal Diagnosis: A. O.

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 “A. O.”

What conditions did your screening results indicate?

Double outlet right ventrical, spina bifida, no folds in the brain, club foot. After further testing at 32 weeks we found out Johanna had an underlying chromosome deletion.

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.

In 2018 we welcomed our 4th daughter, Johanna Joy. She lived 8 days and passed away.

At her 20 week ultrasound we found out that Johanna had multiple birth defects. We were told she was not compatible with life. We carried to term.

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

We went to our prenatal diagnostic clinic pretty strong, we knew we were carrying to term no matter what. We feel that we were respected by each professional that cared for us throughout the pregnancy. Though an abortion was offered again with each new negative development, we were never pushed, they took our first “no” each time.

One of the surgeons told us in regards to Johanna’s Spina Bifida, after we refused a termination once again, that most of the parents on his caseload who had kept their children were overall very happy with them. That was such a bright spot of encouragement.

We made some controversial decisions that were inconvenient for the medical staff, for example putting off the amniocentesis until 32 weeks. Our reasoning was that if my water broke during the procedure, Johanna would still have the best chance at life; the doctors and us would hopefully have the genetic information we all needed to give the best care and make wise decisions for Johanna if she was born closer to term. This was completely respected though we know the medical professionals would have liked to have this information earlier.

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

One of the genetic doctors was very pushy about testing to find where this chromosome deletion came from, including demanding to test our other very young healthy children with no consideration to their future choice in the matter. She had no bedside manner at all and her explanations were extremely difficult to understand. We felt like lab rats in our interactions with this one particular doctor.

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

In cases where the baby is incompatible with life, the parents are the ones who must go on living. Getting it over with as quickly as possible is often not the best option for their future mental health. We find immense peace and comfort in knowing that we were the best parents we could be to Johanna and that we loved her so well every moment of her little life. This has allowed us to grieve, heal and celebrate her life and the choices we made.

I feel more information about caring, gentle, loving and painless postnatal palliative care would also be helpful for parents in some situations where the baby is deemed incompatible with life. No parent wants to cause their child pain and knowing that these are options could be a blessing for many. In our situation we wanted to give her medical care to see how she would do and we wouldn’t have chosen it anyway, but I don’t really think this was specifically offered or discussed, though maybe we weren’t listening.

We so appreciated the surgeon who also told us of the parents who had kept and given life to their special needs kids and were very happy with their decision.

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

There is amazing peace in knowing that we cared for her and gave Johanna’s life the best chance we could and we loved her so well every moment of her life. We were the best parents we could be to her. For our healing this has been the most important part. We are the ones who must go on living, and to be able to do that with complete peace about choices we made is the greatest gift we could give ourselves. We are so thankful we made the choices we did.

Stick to your decisions. Don’t be pushed into anything you aren’t comfortable with or don’t completely understand. Often there is a reasonable compromise between what the doctors are recommending and what your gut says is right, best, or just more comfortable for you. It’s been 6 years and Johanna’s memory brings us joy and thankfulness.

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