Macklin plays in the park with her mother, Camron, on a picture-perfect day. The petite 2-year-old scampers around the playground, happily skidding down a slide one minute and boldly challenging a little boy for possession of a rocking horse the next. To see her in action, it’s hard to believe that she was born with a serious congenital anomaly that required surgery at Children’s.
After a routine ultrasound exam during Camron’s 20th week of pregnancy, she was told that Macklin had a defect of the abdominal wall called an omphalocele, which is a large sac containing some of her internal organs that protruded from her abdomen. It was a shocking revelation for a first-time mom.
“I was very scared at first, because the doctors in my area weren’t very familiar with this condition,” says Camron, who lives in LaSalle, Illinois, 80 miles west of Chicago.
Shortly after receiving the test results, Camron and her husband, Patrick, called Christopher Talbot, MD, a veteran obstetrician and coordinator of Children’s Institute for Fetal Health. Formally established in 2004, the program continues the hospital’s long history of providing counseling and pediatric care planning for pregnant women diagnosed as carrying babies with medical problems. Last year, nearly 1,000 fetal consultations were provided to expectant parents from the Chicago region by specialists at Children’s. Through its multidisciplinary approach, the program draws on virtually all the hospital’s pediatric subspecialties, ranging from cardiology to urology, orthopaedics, genetics and plastic surgery.
Talbot put the family at ease, and set up appointments with specialists at both Northwestern Memorial Hospital’s Prentice Women’s Hospital and at Children’s, where Camron saw Marleta Reynolds, MD, head of the Division of Pediatric Surgery. Together with Max Maizels, MD, Reynolds is co-director of the Children’s fetal health program. Reynolds successfully operated on Macklin to correct the problem when the little girl was a year old, and had grown sufficiently for the procedure.
“When an obstetrician discovers an anomaly in a baby, it leads to tremendous anxiety in the parents,” says Reynolds. “We can calm their fears by providing counseling to explain to families what their child’s condition is, how it can be treated, and whether treatment is necessary either during the pregnancy or after birth.”
Today, a number of diagnostic procedures can be used to detect problems with babies before they are born, including fetal ultrasounds, magnetic resonance imaging (MRI) and genetic and chemical testing. Most of the conditions diagnosed through these pre-natal tests are more common than Macklin’s, including heart anomalies, kidney and bowel problems and facial clefts.
“When babies have problems, only a minority of them are catastrophic,” says Maizels, professor of Pediatrics at the Feinberg School. “The majority of them have irregularities that we can help improve if we know about them early enough, and prevent them from becoming problems later on.”
For many expectant parents, their consultations with the fetal health experts at Children’s are strictly for information. Since the hospital does not provide obstetrical services, its specialists in fetal medicine work closely with families’ obstetricians at their local hospitals.
“We’re educating the patients so they understand the ramifications of the diagnosis – what it will mean to the child and the quality of life for both the child and the family,” says Talbot, assistant professor of Obstetrics and Gynecology at the Feinberg School.
A Children’s urologist for more than 25 years, Maizels’ interest in creating a formal fetal health program stemmed from his long experience in counseling expectant mothers.
“One week I consulted with five pregnant women who, as a result of anomalies found in their ultrasound tests, all broke down crying in my office,” he recalls. “After we spoke they were so relieved. This program allows women to enjoy their pregnancies, instead of feeling like they have a black cloud hanging over their heads.”
As she watches her little girl play in the park, Camron speaks from first-hand experience about the benefits of Children’s Institute for Fetal Health.
“Talking to Dr. Reynolds and Dr. Talbot before Macklin was born was very reassuring at a time when we really needed it,” she says. “If we had gone somewhere other than Children’s for treatment, we might have had a totally different outcome.”
Story originally published October 2008