Fetal Concerns Program Provides Unique Services to Families

It's something no expectant parent wants to hear - "there's something wrong with your baby." Families who are referred to the Fetal Concerns Program at Children's Hospital can expect support and expertise from an entire team of specialists, along with a nurse coordinator to help them each step of the way through delivery and beyond.

"The program officially started in 2000 when we hired a nurse as a program coordinator," said Steven R. Leuthner, MD, MA, Associate Professor of Pediatrics and Bioethics in the division of Neonatology at the Medical College of Wisconsin. Dr. Leuthner also serves as Medical Director of the Fetal Concerns Program.

Caring for the Family Begins Before Birth
When a prenatal diagnosis indicates a fetal problem that will require extra care in delivery, special therapies or surgical intervention soon after birth, families are referred to the Fetal Concerns Program. "It's really a joint effort between the Medical College, Children's Hospital, and Froedtert Hospital," Dr. Leuthner said. Referrals come from across the state, and the program allows women and families to meet with the professionals who will be treating their infant once the baby is born.

"We believe that the earlier they meet us, the better off they're going to be," Dr. Leuthner said, explaining that often frantic parents are doing research on their own and worrying about the problems the baby may have. "Most people who come through us feel more relieved as they leave, once they know what's going to happen. Part of that isn't knowing just what you can read on the Internet about the disease, but knowing the day-to-day expectation of the hospital course for your baby."

Conditions commonly treated through the Fetal Concerns Program include abdominal wall defects, heart defects, genetic disorders, spina bifida and other neurosurgical anomalies, chest lesions, cleft lip and palate, urologic anomalies, neurologic anomalies and multiple fetuses and prematurity risk counseling.

Each team is held together by one of the program's nurse coordinators, who work directly with the family and help lead them through the process. Depending on the medical issues and expectations, the rest of the team will include a perinatologist and a neonatologist as well as specialists from areas that may include cardiology, genetics, nephrology, neurology, neurosurgery, orthopedics, palliative care, plastic and craniofacial surgery, radiology, surgery or urology.

"We pull all those people together to meet with the family prenatally as needed," Dr. Leuthner said. "Within that team, besides all the medical staff, are other team members that people don't always think of as needed from the family's perspective." Lactation consultants, child life services and counselors are all included according to the family's needs and direction.

Birth Location and Plan Important
"We are advocates of the baby's delivery here," Dr. Leuthner said. "Mom and her baby are in the same place, allowing a surgeon or cardiologist or neonatologist to have a face-to-face contact instead of calling her on the phone in another hospital to give her an update."

The father and extended family do not have two hospitals, often in two different cities, to visit mom and baby. "For the fathers, that means they just walk back and forth between floors instead of driving a couple of hours. It's family-centered, so the family can be here, and the baby can be stabilized immediately."

Having mother and child close together provides opportunities for bonding as well. "There is a lot of data that says those first looks, first holds, are meaningful for some type of imprinting," Dr. Leuthner said. He related the story of two babies born on the same day with the same condition - gastroschisis, in which the baby's intestines protrude outside the body. The condition must be surgically corrected within a few hours after birth.

One family had gone through the Fetal Concerns Program and delivered at Children's Hospital, where the mother was able to hold and be with her baby before the surgery. The other mother had to travel to Children's to see her baby three or four days after birth and surgery. "She was standing at the foot of the bed, looking at her baby with a blank face and saying 'I just don't feel like this is my baby,'" Dr. Leuthner related. "She came around, but she missed out on those first days."

Beginning Life with Baby
With the help of the Fetal Concerns Program, the mother and her family have the opportunity to put together a birth plan. This is especially important in cases where more serious defects are known, and decisions about interventions and treatment can be considered before the child's birth. "We make sure they're informed," Dr. Leuthner said. "We make sure the obstetrical plan and the neonatal plan are consistent."

Once the baby has been delivered, the Fetal Concerns Program continues to provide support for the family. "We follow them up to a year and make sure they're transitioned into the Children's Hospital clinics," Dr. Leuthner said.

The program also continues to offer support in subsequent pregnancies. "We're there for the next pregnancy when they're scared to death," said Dr. Leuthner. "Most of the time in those scenarios, we're there to celebrate a healthy pregnancy."

Melissa Rigney Baxter
HealthLink Contributing Writer

For more information on this topic, see the HealthLink article End-of-Life Care for Newborns.

Dr. Leuthner was selected for the Small Business Times' 2007 Health Care Heroes award, which honors individuals and organizations that "epitomize the spirit embodied in the word 'hero' in the delivery of health care to the community."

"These people are doing extraordinary things on the front lines of health care," said Dan Meyer, Small Business Times publisher. "Every day, they make a difference in someone else's life, and it's an honor to present a program that honors their devotion and their achievements."

MCW Health News presents up-to-date information on patient care and medical research by the physicians of the Medical College of Wisconsin.