Complex special care for the smallest patients
The new Yale Fetal Care Center is the first of its kind in the region, and usually the last place parents-to-be expect to find themselves. Katrina Spina, however, decided it was exactly where she wanted to be after an ultrasound showed her baby had a complex heart defect called tetralogy of Fallot—a group of four anatomical abnormalities that together lower the baby’s blood oxygen levels—and would need surgery. A pediatric cardiologist sat with Katrina and her husband for an hour, drawing diagrams to explain the tiny heart’s dysfunction.
“Even though it was scary, the doctor was so confident. There was confidence and assurance that this is something they see all the time and could fix,” said Spina.
The Yale Fetal Care Center opened a new office in March at One Long Wharf, next to a Yale Pediatric Specialty Center. Clinicians in the Fetal Care Center monitor and care for unborn patients from diagnosis to delivery; depending on the family’s needs, the specialty center continues that care after birth, even into the teen and adult years. Some prospective parents visit fetal care specialists at the Yale-New Haven Children’s Hospital, where they can also tour the Newborn Special Care Unit (NBSCU).
“We put the patient at the center of the care and tailor everything around them,” said Mert Ozan Bahtiyar, M.D., director of the Fetal Care Center. “Our goal is for the patient to receive compassionate care more expediently, with fewer trips to the hospital, which helps the family feel less anxious, less overwhelmed, and in better control of the situation.”
The process usually starts when a mother-to-be gets abnormal ultrasound results from a private obstetrician or from the center, which performs at least 10,000 detailed perinatal ultrasounds a year with the latest technology. “We screen everybody in this area. We know the ultrasound is not perfect, but the more careful you are, the more you can pick up problems,” said Dr. Bahtiyar.
In addition, pediatric cardiologist Bevin Weeks, M.D., and obstetrician Joshua Copel, M.D., co-directors of the Yale Fetal Cardiovascular Center, perform 1,400 to 1,500 fetal echocardiograms a year, making Yale the most active center of its kind in New England. Their group diagnoses between 60-70 cardiac anomalies a year.
A galaxy of specialists
Three percent of all fetuses have some congenital abnormality, ranging from such surgical challenges as congenital diaphragmatic hernia to renal and intracranial abnormalities. Dr. Bahtiyar has special expertise in treating serious complications associated with identical twin pregnancies. The Fetal Care Center is the first and only center in Connecticut that performs fetoscopic laser photocoagulation for advanced twin-twin transfusion syndrome.
Once a problem is diagnosed, a patient in the Fetal Care Center might see a wide range of specialists, including pediatric cardiac surgeon Paul Kirshbom, M.D.; neurosurgeon Michael DiLuna, M.D.; neonatologist Orly Levit, M.D., and others.
All specialists gather once a week to learn about new problems or approaches. They discuss the best management of selected cases and review any that are close to delivery. With planning, specialists can be on hand when the mother is in labor to provide immediate care for the newborn.
Mending the weakened heart
The most common problems are those affecting the developing heart, with 0.5 to 1 percent of all fetuses affected by a congenital heart defect—as many as 8 or 9 out of every 1,000 babies are born with some sort of structural heart problem. Yale’s pediatric cardiovascular surgery team, led by Dr. Kirshbom, has performed complex cardiac surgeries as early as the first week of life.
“There are rare times when we can’t come up with a strategy to address a cardiac problem,” said Dr. Weeks, who cares for the Spina family. While many infants will have ongoing issues that require specialized care, “we are learning more and more about how to ensure the best quality of life for them,” she added.
Diane Wall, M.S.N., R.N., fetal care coordinator for the center, sees patients through the pregnancy and beyond. She connects families with social workers and assists with housing options when the patient must remain close to the hospital for longer periods of time. “Listening is important,” said Wall, adding that the center offers the services of social workers, clergy, and even a support group in addition to its pediatric specialists.
Some parents facing a difficult diagnosis feel the only solution is to end the pregnancy. Dr. Bahtiyar said, “Whatever the parents’ decision, we’re here to help. These are rare diseases, there’s a lot of issues—family dynamics, social structures, religious beliefs. It’s not easy.”
Ultrasound testing is critical
If Katrina Spina has a message for other parents, she would tell them to have an ultrasound and follow up with any other prescribed tests. After spotting the problem, the Yale team monitored her baby regularly, and Katrina gave birth to her son Joseph with specialists nearby waiting to take him to the NICU for immediate observation. He spent two days there before Katrina and her husband Mike took him home. Joseph’s continuous positive test results have allowed the cardiac team to plan Joseph’s surgery for this summer.
Joseph’s tetralogy of Fallot turned out to be an uncomplicated case, with a very good long-term prognosis. But without the conclusive ultrasound, Katrina Spina doesn’t know whether the problem would have been discovered. “We look at him now and think you’d never know. We are so lucky and so blessed.”
To contact the Fetal Care Center, call 1-855-4FETALCARE (1-855-433-8252) or e-mail email@example.com.
This article was submitted by Mark Santore on May 1, 2014.