Jamie and her husband found themselves in the twisted position of having to haggle the cost of their own nightmare.Įventually, Jamie underwent the procedure. The clinic asserted that the baby was a bit older, making the procedure more costly. She and her husband were informed that the procedure would cost an extra $100 - boosting the cost to $800 - because the center’s clinicians disagreed with the gestational age that Jamie and her husband had reported. Once inside the facility, Jamie had an ultrasound to confirm the cost of the procedure, which would be based on the baby’s gestational age. Protesters shouted at them as they entered the clinic: “Why would you want to hurt daddy’s little girl? That’s daddy’s little girl you’re killing!”
Because their local hospital was charging them $8,000 for the procedure, Jamie and her husband, cash poor from a recent home purchase, opted to drive to an abortion clinic.
I was horrified and saddened by her description of her experience.Ī baby with a disease gene or no baby at all: Genetic testing of embryos creates an ethical morassĪs a Missouri resident, Jamie’s insurance did not cover pregnancy termination in the case of severe fetal impairment. A few months after my loss, my friend Jamie ended her pregnancy due to trisomy 18. The day of my surgery, I was treated like any other surgical patient. We received superior counseling from multiple physicians and a genetics counselor, who helped inform us and support us without dictating or judging our decision. I received care at one of the best hospitals in the country. Our medical costs were fully covered by my insurance. It felt good to have her home, even if it wasn’t in the way we had expected.įor such a heartbreaking event, we had the best-case scenario. We had her remains cremated and placed her ashes in a tiny white urn small enough to fit in the palm of my hand. It contained a tiny baby’s hat and a thick piece of paper marked with purple footprints the size of my thumbnail. My husband and I were given a small box sealed with a bow. I had never felt such profound emptiness. When I woke up from the dilation and evacuation procedure, during which her remains were removed from my body, I cried. Two days later, I tried to hear her heartbeat again, but it was no longer there. Using our home Doppler monitor, a Christmas gift from my sister, we listened to her heartbeat. Each day, I hoped that our daughter had not developed sufficient neural connections to begin sensing that her organs were failing. And so, at 15 weeks of gestation, we made the painful decision to end our very wanted pregnancy.Īs the date approached, I wore bulky clothing in an effort to hide my protruding belly - I was terrified someone would congratulate me on my pregnancy. Our daughter was not mosaic.Īs parents, we felt it was our duty to protect our daughter from the inevitable suffering she would meet if she were to make it to term. In rare cases, babies with trisomy 18 are mosaic, meaning only some cells possess the harmful extra chromosome, which makes the disease less severe. The NIH has poured $1 billion into long Covid research - with little to show for it The few who live past one year have serious health problems, such as a toddler lacking abdominal wall muscles, revealing the slithering movement of intestines beneath his skin, or a 1-year-old who cannot not defecate on her own, requiring anal sphincter dilation multiple times each day. The majority of those who make it to term die within five to 15 days, usually due to severe heart and lung defects. Most babies with trisomy 18 die before they are born. The cells of these babies have three copies of chromosome 18 instead of the usual two. Trisomy 18 is rare, occurring in about 1 in 2,500 pregnancies. My husband and I immediately understood the gravity of this diagnosis - it is one of those rare conditions we expected to encounter on a medical board exam, not in real life. After an agonizing two weeks, the results came back: our daughter had trisomy 18. Arms folded over my head, I tried to stay still as a specialist in maternal/fetal medicine used a large needle to pierce my abdominal wall and then my uterus in order to take a sample of the placenta for genetic testing. A few hours later, I lay on a hospital exam table.
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