When routine testing at 20 weeks showed that Southampton, PA, mother-to-be Andrea Malloy's alpha-fetoprotein (AFP) levels were high, the news was not good. Andrea and husband Louis were told that higher than expected levels of AFP, a substance made in the liver of a fetus, can indicate several serious problems.
Potential problems include neural tube disorders such as spina bifida (an opening in the spine) or anencephaly (lack of brain development). The high AFP levels could also indicate a defect in the wall of the abdomen called gastroschisis.
"I was shocked and frightened," says the first time mother, who was only 22 at the time. "And I had questions that weren't being answered. I thought if my primary obstetrician couldn't tell me exactly what was going to happen, I should go to someone who could. I decided to go with the best — Children's Hospital."
Extensive testing done at the Center for Fetal Diagnosis and Treatment provided some mixed news. The baby did not have spina bifida. Instead, the diagnosis was gastroschisis, a birth defect that causes the fetal bowel to extend into the amniotic fluid through a small opening in the abdomen. The herniation can cause the unprotected bowel to be damaged during delivery. The bowel also may not function well after birth.
The defect, however, can be corrected by surgery.
Born with gastroschisis
Andrea went into labor at week 37, and Brianna was born on April 25, 2004, via a scheduled cesarean section. She weighed 6.9 lbs.
"They had said OK to vaginal delivery, but the baby's heart rate was fluctuating, so we went with the C-section," Andrea recalls.
Brianna was immediately taken to Children's Hospital's Newborn/Infant Intensive Care Unit (N/IICU), where her heart rate stabilized. The gastroschisis, however, was extensive. Her large and small intestines were outside her abdomen. By the fifth day, Brianna's intestines were returned to her abdomen via a gradual gravity reduction. The opening was then closed surgically and a belly button created for her.
Although the surgery was successful, Brianna was just beginning a long journey. It took a month for her digestive system to start working, at which point she was given breast milk and was feeding normally. But she then became unable to tolerate the breast milk. She was changed to a special soy-based formula and a feeding tube was inserted to help her get the necessary nutrition.
Week after week, Brianna's feeding problems continued with no clear explanation. Eventually, she was moved to Children's Seashore House, an adjoining facility that provides comprehensive care to children with developmental disabilities, conditions or chronic illness. Her formula was changed to a different soy-based product.
"She wasn't doing well," says Andrea. "By 3 months she only weighed 8 pounds. She had poor absorption and wasn't digesting the food."
Stabilizing, then going home
Then things changed for the better and she stabilized. By the fifth day at Seashore House, she was well enough to go home.
Although Brianna still needed six different medications when she came home, she continued to thrive.
"In the next two weeks she gained a pound and a half," says Andrea.
There also were no indications of developmental delays as can be the case with babies who have spent a lot of time in a N/IICU. "She crawled on schedule. Now she loves to play in the park, paint, and always has to have a book with her," says her mom.
Brianna also has a healthy appetite, particularly enjoying green beans and broccoli.
"I owe Children's a big thank you," says Andrea. "The nurses taught me how to do things like take Brianna's temperature and blood pressure and to measure out medicine. They were so helpful, especially since so many of them were moms themselves and understood what I was going through."
Being informed and advocating for her child
Andrea also counsels other parents in similar situations to educate themselves as much as possible and bring in lists of questions to be answered.
"So much is going on, and the emotions are so high, you need to be prepared to communicate your concerns," she says.
The nurses inspired her to speak up when confused and ask questions, she says. She also found the Hospital's Connelly Center useful for research and just meeting other parents with sick children.
"I owe Children's my life," Andrea says. "Brianna is doing wonderfully and is such a blessing to us. I love to bring her back to visit the nurses and show off how well she is doing. I'm so thankful to everyone involved."
Originally posted: June 2009