In 2013, Regina Scott, of Morgantown, West Virginia, was excited about her first pregnancy. Her father had passed away just a few months earlier. Her pregnancy was a happy focus for Regina, her husband Mathew, and her mom Joy.
Things went fine for the first few months of her pregnancy, says Regina. However, as she entered her second trimester, signs of difficulty emerged. Those signs proved to be life-threatening for both Regina and her baby.
She thanks her WVU Medicine Children’s doctors for giving her family the best possible outcome — a happy, healthy baby.
The baby had stopped growing
At a routine prenatal visit, Regina’s obstetrics and gynecology provider noted that the baby was small for her gestational age. The doctor referred Regina to a maternal-fetal medicine specialist. That team monitored the baby for two weeks. An ultrasound showed it was time to admit Regina to the hospital for closer observation. The baby had stopped growing. Her doctor said it was likely due to decreased blood flow to the umbilical cord.
Regina’s blood pressure was normal, and she had no other symptoms when she was admitted. But on her second day in the hospital, after lunch, she began to feel nauseous and had abdominal pain. By dinnertime, the abdominal pain was severe. Her doctors told her these were signs that her kidneys and liver were shutting down. That’s when Regina learned she had a rare and severe form of preeclampsia called HELLP syndrome. The condition is life-threatening, and the mortality rate is 30 percent.
HELLP stands for hemolysis (red blood cell breakdown), EL (elevated liver enzymes), LP (low platelet count). HELLP syndrome can be difficult to diagnose, especially if there is no high blood pressure. The syndrome is often mistaken for gastritis, flu, or other conditions.
The syndrome is so rare that Regina’s high-risk, maternal-fetal medicine doctor had seen, on average, just one case of HELLP per year.
“It was very scary,” Regina remembers. “They told my husband and me they had to take the baby to save my life. Delivery was the only cure.”
Regina went into surgery not knowing what to expect. Her husband and mom didn’t know what to expect either. They didn’t know if the baby would survive.
When Regina woke up after the C-section, she felt relieved and thankful to be alive. Luisa was born at 25 weeks gestation, at just 14.5 ounces. The tiny baby had bleeding in her brain.
Visiting baby four times a day
“They had to revive Luisa twice after she was born,” says Regina. “We were thrilled she had made it, but they told us the next 24 hours after birth she had only a 50-50 chance of survival. There was no guarantee. I asked that they do everything possible for her.” In the days ahead, Luisa required heart surgery.
During the 125 days in the hospital, Luisa was cared for in the neonatal intensive care unit (NICU). She was on a ventilator for at least 70 days. After Regina left the hospital, she, Matthew, and Joy took turns visiting Luisa four times a day every day. When it was safe to do so, they took turns holding and feeding the baby.
A customized CD to stimulate baby
“We talked to her, we sang to her, we touched her,” says Regina. A NICU nurse suggested they create a CD of their voices to be played when they weren’t there. The CD featured classical music in addition to their voices.
Regina, who is a physical therapist, was able to help with neonatal physical therapy to stimulate the baby’s growth, range of motion, and focus.
Three months later, Luisa finally went home. “When she had her first birthday, Luisa was off oxygen support, and she was developmentally where she should be for her adjusted age,” says Regina. “We couldn’t ask for more, considering everything she’d been through.”
A thriving, happy child
Today, at age six, Luisa is in kindergarten. “She’s reading and doing math. Her writing is coming along. She’s up to speed with her classmates. She loves school and wants to be a teacher.”
Luisa is “an outgoing child,” says Regina. “She loves to be with others — going on trips, dancing, singing, enjoying anything artsy.”
Early medical intervention was the key, doctors told her. Also, the daily singing, talking, and gentle touching her baby received were key to the successful outcome. Regina, Matthew, and Joy have spoken at NICU medical conferences about their success story. Regina also participates in the family advisory committee for the new WVU Medicine Children’s Hospital. “We’re so grateful for the care we received. We want to give hope to other parents.”