Arvizu: High Risk Pregnancy: A Beautiful Birth and Heartbreaking Loss

Thursday, March 19, 2015

Erin Arvizu, GoLocal Worcester Health Columnist

The words “high risk pregnancy” refer to a number of maternal and neo-natal conditions that require more medical attention than a “normal” pregnancy. Today, Meryl Estabrook is sharing her own high risk pregnancy story. Meryl and her husband faced many heartbreaking diagnoses during her nine month pregnancy and they knew that once their sweet daughter Ella Louise was born, their time to spend with her would be short. Estabrook wanted to share her story with others who may be dealing with bereavement or coping with a difficult pregnancy. In her case, there was a silver lining in that the local hospital implemented a new practice to help make things a little bit easier for her. “It was like someone knew I’d had all the trouble I could handle,” Meryl explained, “and despite the circumstances, her birth was beautiful, born at 4am in a dim room with just me, my husband, my doctor and a nurse present.”

Estabrook’s pregnancy became high risk early on when at her twelve week ultrasound, they saw a pocket of fluid behind her baby’s neck. At sixteen weeks, her baby was diagnosed with Turner Syndrome. Approximately 1 in 2,000 females is born with Turner Syndrome. “According to the genetic counselors,” Meryl said, “it’s not caused by a defective gene. It’s an accident that occurs the way the sperm and egg meet at conception.” Turner Syndrome happens when all or part of the second X chromosome is lost either before or at conception.

“Turner Syndrome alone isn’t that bad,” Meryl shares, “however a few weeks after the initial diagnosis, we were also told our baby had a Hypoplastic left heart defect, which was caused by the Turner Syndrome.” In a nutshell, this meant that Ella Louise only had half a heart. In order to survive, she would need a series of drastic surgeries starting within one day of her birth.

Meryl and her husband consulted with several pediatric cardiologists across the country, but tragically, the prognosis was not good. The surgeries would not cure her baby’s heart condition, nor would they guarantee survival. Best case scenario, Meryl was told her daughter may possibly live to be between 10 and 20 years old if she did survive the surgeries. After weighing the outcomes, Meryl and her husband came to a decision about how to proceed. “We decided that with everything she had against her – Turner Syndrome, heart defect and only one functioning kidney – we wouldn’t put her through multiple open heart surgeries. Once we got the full picture and made our decision to just love and cherish her as much as we could in whatever time we had with her after birth, the rest of my pregnancy was difficult. I knew that once I gave birth, the clock would start ticking and I’d have anywhere from a day to a week with my baby that I’d spent nine months building and feeling very much alive inside of me.”

Despite the heartbreaking outcome, Meryl had a wonderful experience at UMASS Memorial when her daughter was born. Her labor and delivery went smoothly and there were special stickers and notes in her chart to make sure all hospital staff was aware of her situation. “Stories of doomed pregnancies like mine are sort of taboo,” Meryl shared, “but I think it’s important to share these kinds of experiences. My advice to anyone dealing with a similar pregnancy is to not be afraid to ask for whatever will make you most comfortable. We had a meeting with my doctor and hospital staff to discuss exactly how my labor, delivery and hospital stay would go. They created a special form with all of my preferences, which were all noted in my chart. And there was a sticker on my door alerting

all staff of my situation. For me, not having to keep repeating my wishes of no resuscitation or asking staff not to come in saying congratulations or gushing over the baby made a big difference.”

Meryl also encourages others to seek counseling and support to help cope with situations like hers. “And don’t feel bad about avoiding trigger situations like baby showers while you are healing. Be kind to yourself.”

Erin Arvizu is owner of Wild Orchid Baby. If you need help exploring your birth options, stop by Wild Orchid Baby located at 490 Shrewsbury Street in Worcester and chat with local birth professionals and childbirth educators.