Stories of Prenatal Diagnosis: Annie M.
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 Annie M.
What conditions did your screening results indicate?
LBWC (Limb Body Wall Complex)
Did it turn out to be the case that your child had these conditions?
No, he had something similar, but different. His autopsy showed he had OEIS (Cloacal Exstrophy Syndrome).
Please tell your story of your experience in your own words.
I went in for some vaginal bleeding around 17 weeks. My OB/GYN checked for a heartbeat because I was carrying twins. He did an ultrasound. I remember him scanning the babies forever! He kept asking vague questions like about how far I was and something felt off. He confirmed I had an anatomy scan scheduled with Maternal Fetal Medicine and that it would be in two weeks. Both babies had heartbeats, but he scanned baby B forever.
I left thinking it was fine and went to my anatomy scan two weeks later. We scanned baby A and all was good. When the tech went to baby B, she was scanning around for a bit and I could tell something was wrong. She put her hand on my leg and said something didn’t look right and something was wrong with my baby and I needed to get the MFM doctor to come in and scan.
The doctor came in and was so stiff and awkward. He wouldn’t answer any of my questions and was very short. He scanned for a long time and then went to his office and left us. He pulled us into a room and explained my baby had a rare condition called LBWC and it was incompatible with life. I didn’t like this doctor and ended up switching to a new MFM doctor for my pregnancy and follow up as I was now considered high risk. It was a horrible experience. The ultrasound tech was wonderful and I appreciated her being up front with me when she could see something was wrong.
What aspects, if any, did you like about the way your medical team handled the situation?
I loved my new MFM doctor that did all my care after my initial diagnosis. He was compassionate to our situation and had a wonderful bedside manner. Was very accommodating and great. He ended up delivering my 2 other deliveries. My last ended up being another set of twins.
What aspects, if any, did you dislike about the way your medical team handled the situation?
The diagnosis was bad and the geneticist gave us the runaround a bit too. Just bad communication and people who were heartless. The doctor who diagnosed me at the anatomy scan was stiff, rude, and treated me as if something was wrong with me. Wouldn’t give me ultrasound pics of my baby that day after I asked. Acted like I wouldn’t want to see him once he was born. It was a pretty bad experience to start.
When you’re getting life changing news for the worse, you want people to meet you with care and compassion. We don’t want to feel like an inconvenience for you to do your job.
What recommendations do you have for medical providers who are giving parents prenatal screening results?
Be ready to face anything. Have empathy for people who are facing something unexpected and be kind. Don’t assume you know how a patient will feel about hard news and accommodate them. They will remember their experience forever!
What recommendations do you have for parents who are receiving prenatal screening results?
Pick a doctor you love!
If you appreciate our work and would like to help, one of the most effective ways to do so is to become a monthly donor. You can also give a one time donation here or volunteer with us here.
