Emily and Stephan Boettcher are celebrating their daughter’s first birthday — after learning from doctors there was a slim chance their child would survive.
Emily said she was having a perfect pregnancy until her second trimester, when doctors told her their third child had Trisomy 18, a genetic disorder, which would likely result in a stillbirth.
Against all odds, Emily carried her pregnancy to full term, and gave birth to her first daughter by emergency C-section surgery Nov. 9, after the baby suffered complications while inside the womb.
Emily and Stephan decided to name their daughter Sara.
“The pregnancy was good until it wasn’t,” Emily said. “It was hard to hear doctors say she wouldn’t make it. It was hard to process loving a baby I might not have been able to hold.”
Trisomy 18, also known as Edward’s Syndrome, is a rare genetic disorder that results in a third copy of the No. 18 chromosomes, and can lead to developmental disorders and complications in almost every major organ, according to the Children’s Hospital’s webpage.
Sara was born breathing on her own, which Emily said was a great sign, as babies with Trisomy 18 usually have severe respiratory disorders; but Sara was immediately transferred to the neonatal intensive care unit due to having holes in her heart.
“It was difficult to have a cesarean, then have my baby in the NICU right after being born,” Emily said.
After spending three weeks in the NICU, Sara was transported to Children’s Hospital Los Angeles for continued monitoring of her breathing.
The day after Christmas, Emily and Stephan were able to bring Sara home.
“We were able to spend the holidays together at home, which was such a blessing,” Emily said. “But Sara had to go back to Children’s Hospital shortly after because she was experiencing respiratory distress.”
Due to Sara’s condition, Children’s Hospital was unable to provide the procedures necessary to help her. Luckily, Emily said she was told one doctor at UCLA Medical Center was able to perform the surgery Sara would need.
At just 2 months old, Sara underwent open-heart surgery. Her heart stopped beating twice while on the surgery table, and she was placed on life-support for six days after the surgery.
“Doctors told us we only had minutes with her until God came to take her to heaven,” Emily said. “But she kept fighting and, after a month of recovery, she came home again in February and she’s been here since.”
Now Emily prepares to have a virtual party for Sara to celebrate a milestone, her first birthday.
“We would have loved to throw a big reception and invite all our family, the doctors and nurses who helped us during that hard time,” Emily said, “But because of COVID(-19) we’re very strict with quarantine because Sara is very high-risk.”
Instead, the Boettcher family will decorate their house with birthday signs and will host a virtual party on Zoom for family and friends to join and sing Sara “Happy Birthday.”
Sara has been undergoing physical and occupational therapy treatments to help her development, which Emily adds Sara’s two older brothers help with, and will require one more surgery next year, which Emily said she feels confident about.
“Most babies with Trisomy 18 don’t even make it to their first birthday, so we don’t really know what’s in store for the future but Sara is doing great and is learning to the best of her abilities,” Emily said. “She’s already exceeded most expectations by making it to her first birthday.”