Sara's Story: Fragile Infant Survives Life-Threatening Condition

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“I wasn’t sure I was ever going to meet my baby.” That was the fear gnawing at Sara Nelson as the complications with her pregnancy grew more severe.

Early on, a routine ultrasound showed a tumor on the placenta, an organ that provides oxygen and nutrients to the baby. The tumor signaled chorioangioma, which occurs in about 1 percent of pregnancies. While unusual, chorioangioma typically doesn’t jeopardize a baby’s health unless the tumor grows beyond one and a half inches. Sara’s tumor grew to nearly five, increasing the odds that an early and emergency Cesarean section would be needed due to health risks for both baby and mom.

But for a mom-to-be with a severe case of chorioangioma, Sara was lucky. She lived just 15 minutes from the specialists at Miami Valley Hospital’s Maternal-Fetal Medicine team. The hospital would become a second home to her and her husband, Justin.

“Tumors that size are rare – about one in every 5,000 to 10,000 deliveries,” says David McKenna, MD, Sara’s maternal-fetal specialist. He knew a tumor this large would jeopardize baby Evelyn’s ability to survive, in part because low blood count could slow fetal development.

On three occasions, they performed cordocentesis, a delicate procedure that removes blood from the umbilical cord to determine if a baby is getting what she needs. In each case, the results indicated Evelyn was anemic. Because anemia can be a killer, Sara’s baby needed three separate intrauterine intravascular transfusions. “We took blood from mom and gave it to the baby,” Dr. McKenna explains. It’s a procedure that may sound simple, but it takes a roomful of specialists to pull it off.

With her husband at her bedside, and with brief visits from 2-year-old daughter Elliette, Sara spent the last eight days of her pregnancy in the hospital. The couple celebrated their sixth wedding anniversary there. Hospital staff provided the cake.

Baby Evelyn was born by Cesarean section, 10 weeks premature, on Aug. 12, 2016. She weighed 4 pounds, 5 ounces. “She was so sick, she couldn’t even cry,” Sara recalls. “As soon as she was born, they held her up for me to see, Justin took a picture, and she was whisked away.” Their journey thus far had them anxious and exhausted.

But plenty more anxiety lay ahead. It would be 11 days before Sara got to hold her tiny newborn. “She was so scary looking — her skin a weird color and all those machines. We knew she might not survive. We cried, we prayed, and we put our trust in the NICU team.”

Amanda Graf, MD, is one of seven neonatologists who provides around-the-clock care to fragile babies like Evelyn in the Level IIIB Neonatal Intensive Care Unit. “Evelyn was incredibly sick, definitely a life-threatening situation,” Dr. Graf remembers. Sara’s condition meant Evelyn wasn’t getting the blood she needed. Evelyn suffered from fetal hydrops, which caused fluid around her heart. Her lungs were not fully developed.

For 69 days, a team of cardiologists, neonatologists, respiratory therapists, nurse practitioners, and highly-skilled nurses monitored Evelyn’s every move. Daily echocardiograms monitored her heart. A ventilator helped her breathe. Sara remembers being amazed at the ease with which the team helped Evelyn get stronger. “It’s what we do. It’s all we do,” explains Dr. Graf in response to Sara’s gratitude.

Evelyn met her big sister in October, but was confined to the family’s apartment for 23 weeks. She missed holidays and special occasions with extended family. A springtime walk to the park would be her public debut. “Finally! It was so hard being stuck inside,” says Sara, who is now happy to be back teaching eighth grade at Tecumseh Middle School. “I’m always counseling my students about not missing class, and there I was gone for an entire year!”

Today the Nelsons are a busy family of four living in New Carlisle. Evelyn is a developmentally appropriate 1-year-old who sports six teeth, crawls everywhere, and loves playing with her big sister. “Our journey was rough,” says Sara, “but we wouldn’t trade it for the world. We’re so lucky!"

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Amanda Graf, MD

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