A happy outcome
URBANA — For the first seven weeks of her life, home for Lydia Tucker was a neonatal intensive care isolette with a mobile overhead at Carle Foundation Hospital.
On Thursday, her parents, Natasha Tucker and Tucker's fiance, Bart Morgan, of Marshall, finally got to bring her home.
"It doesn't seem real," Tucker said.
Baby Lydia was born five weeks early on July 2 with a rare birth defect of the abdominal wall called gastroschisis, in which the intestines protrude outside the body.
This condition is typically picked up on a baby's first ultrasound, said Carle neonatologist Dr. Vitaliy Soloveychik.
Lydia Tucker was first diagnosed with gastroschisis 13 weeks into her mother's pregnancy. The survival rate is typically high, and Morgan said they knew their daughter's chances were good.
Still, they worried about the complications, among them a premature birth.
"Gastroschisis kids generally deliver a little earlier," Tucker said.
The diagnosis turned the pregnancy into a high-risk one. It also meant the birth would need to take place at a hospital with a neonatal intensive care unit, according to Tucker, a 33-year-old Carle Foundation Physician Services nurse in Coles County — though, she said, she'd planned to deliver at Carle anyway.
Babies born with gastroschisis can undergo surgery after birth to close the opening, but for cases such as Lydia's, when the gastroschisis is large, the initial treatment is a "silo," a vertical bag placed over the opening for about nine days, Soloveychik said. The silo treatment uses gravity to allow the organs to fall back into the abdomen, and sometimes also includes a little squeezing by hand to help it along, he said.
Recent research suggests gastroschisis cases are on the rise, and Soloveychik said he's seen that through recent cases at Carle, with even another baby born there with the same condition on Thursday.
"The incidence is on the rise, and unfortunately we don't how it happens and how we can prevent this problem," he said.
A University of South Florida study published last fall looked at thousands of gastroschisis cases in 15 states over a decade and found cases nearly doubled — from 2.32 to 4.42 per 10,000 live births, with the growth in numbers primarily among younger mothers.
Some of the complications that come with the condition involve feeding issues, Soloveychik said, but, he added, "with gastroschisis, the majority of the kids, they'll do just fine."
Lydia still has some feeding issues, Tucker said as she and Morgan were driving their daughter home. She can breastfeed only minimally and needs to build up weight through fortified breast milk she's taking in through a bottle.
She'll also have to have periodic developmental screenings. She has a hernia that will need to be repaired through surgery when she's about 2, and she will be at risk for bowel obstruction all her life as a result of her condition, Tucker said.
For now, though, Tucker said, "she's a very happy baby."
Tucker and Morgan say they either made the hour-and-a-half commute from Marshall or stayed overnight in Carle's guesthouse to be at Lydia's side during her time in the Carle NICU. Tucker's three sons eagerly awaited the homecoming of their new baby sister.
During Lydia's NICU stay, Tucker says she, her 14-year-old son and a nephew designed gastroschisis awareness T-shirts and sold them as a fundraiser, giving the $500 they raised to Carle's Circle of Care program that helps women through pregnancies that have probable negative outcomes.
This was a way they could help families who wind up in worse situations than they did, Morgan said. They considered during Tucker's pregnancy that Lydia might not have a good outcome but now have a positive prognosis.
"I think I thought about that every day," Tucker said.
Circle of Care gives help right away
Circle of Care is a newer program at Carle Foundation Hospital to help expectant parents through pregnancies when their baby's outlook is life-limiting.
When expectant parents are told a baby is unlikely to live, or live for very long, they would otherwise be left just waiting for something to happen or for the birth, said Linda Ellison, perinatal bereavement coordinator at Carle.
"So we needed some way to begin caring for them when they received the diagnosis," she said.
Circle of Care, provided without cost to the families, sends in that extra care right away, trying to help the parents absorb the difficulty they're facing, "and to kind of gently help them moving through the process," Ellison said.
For example, parents in this situation are given tours of the labor and delivery area privately, so they don't have to endure that experience in a group of other expectant parents facing happier outcomes.
"So that their questions that are unique to them can be answered, and they're not standing out in a group," she said. "They're not going to have the happy clappy experience."
When babies are born with a short life expectancy, the program can help arrange home care to help the parents so they can take their babies home, Ellison said. It can also connect parents with counseling and support and assist with funeral plans, she said.
Parents with this kind of diagnosis are also encouraged to do a birth plan, similar to those other expectant parents do, but they're also encouraged to include how they'll want to record the memories of the baby at the birth ahead of time and tackle the tough decisions, such as: will they want to hold their baby while the baby is still alive and will they want their baby kept on life support.
"We try to give them things to think about, so when they come to the hospital, they know what to expect," Ellison said.