Jeannie's Heart Journey
By Esmeralda Printz
My pregnancy with Jeannie started as a twin pregnancy. We found this out on November 19, 2020. We shared the news with close relatives that we love dearly. They were Monochorionic (identical) Twins. Her twin (Twin b was small and had a weak heartbeat. My doctor said there was a small chance of Twin B surviving. On November 30th me and my husband got devastating news that Twin B was no longer viable and had no heartbeat. We were told Vanishing Twin Syndrome happened and that my body would absorb Twin B. After that we thought we wouldn't have any more issues with my pregnancy.
On February 23, 2021 we had our anatomy scan. There we found out of a possible heart defect and was referred to a cardiologist in town. When we visited the cardiologist in town, we were told her heart only had 3 chambers and that it was working really hard. We were we also told that she had heterotaxy where her stomach is on the right side of her body instead of in the left side. The cardiologist the referred us to a pediatric cardiologist in Dallas.
Photo Courtesy of Jeannie's Heart Journey
On April 29th we came to Dallas to visit the pediatric cardiologist and to see a few more doctors. That morning when we were getting a sonogram done, we were notified that Vanishing Twin Syndrome didn't happen. The doctor told us we were dealing with Twin Reversed Arterial Perfusion (TRAP Sequence). Basically, I was still carrying Twin B but it was an undeveloped baby. Twin B was described as just being a body with 2 legs and a kidney. The doctor who did the sonograms had told us she was going to talk to some doctors she knew that delt with TRAP sequence cases and would try to get us in to see them.
We then met with the pediatric cardiologist who told us Jeannie had Hypoplastic Left Heart Syndrome among other defects with her heart. The pediatric cardiologist said she would have to go through 3 separate open heart surgeries. The first would be right after she was born, the second one would be when she was 4-6 months old and the last would be 4-5 years old. Me and my husband weren't ready for what was to come but knew we would do whatever it took to get her to a place of some kind of normalcy.
On April 30th we were told that TRAP Sequence was normally caught at 15 -17 weeks in gestation and that they've never personally seen it this late in gestation. At this point I was 30 weeks and 6 days pregnant. That day every doctor I saw I would ask, "Have you dealt with TRAP Sequence? " And every doctor would say yes but they've rarely heard of it being caught this late in gestation. We were told Jeannie's heart was working hard at pumping blood through her body to her Acardiac Twin. The doctors recommended we go through a procedure where they place a needle through my abdomen to burn Twin B's umbilical cord cutting blood flow to save Jeannie. The doctor told me and my husband if we chose not to go through with the procedure, he recommended I admit myself to the hospital because Jeannie could go into heart failure at any moment and not make it. My husband and I both agreed it would be the best choice to go through the procedure to give Jeannie a chance at life.
Photo Courtesy of Jeannie's Heart Journey
On May 1st we went through the procedure, and it was a success. We were discharged the following day on May 2nd and that afternoon we slowly made our way home. On May 4th my water broke at 9am, and I was flown to Dallas that evening. By the next morning miss Jeannie was born and sent to the NICU.
On June 10th, they attempted to place a Stent but her anatomy made it risky so they pulled out and decided the safest route was to do surgery. On June 22nd Jeannie underwent her first heart surgery. During recovery she had some setbacks but on August 16th she was able to be discharged. We had to stay local here in Dallas but thankfully we've been staying at Ronald McDonald house of Dallas. We had to work on getting her weight up and let her grow to prepare for her 2nd heart surgery. On October 12th she went in for a heart cath to determine how her heart looked and see if she was ready for her second surgery. On November 15th she went in for her second heart surgery. Her recovery this time has been about the same as the first. We've hit a few setbacks, but she has overcame each one. She's a fighter and continues to amaze me and her team of doctors.
Photo Courtesy of Jeannie's Heart Journey
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