A glimpse into the womb sets a life-saving team into action
The little pink lines didn't lie. When Diane McGroarty of Glassboro found out she was pregnant, she was a little surprised, but happy. Her pregnancy started out like most normal pregnancies do — with a little morning sickness and fatigue. At six weeks, she had her first prenatal visit and everything seemed fine.
Since she was over age 35, McGroarty had an amniocentesis at 16 weeks, a test used to detect genetic abnormalities in a fetus. She also was excited about catching a glimpse of the little one growing inside her through an ultrasound.
Ultrasound reveals a dramatic condition
What is gastroschisis?
Moving forward after the diagnosis
Preparation for birth is a team effort
Surgery options offer hope
September 13, 2001: Delivery day
Special care for a very special child
Virtua/duPont Children's Health Program
Ultrasound reveals a dramatic condition
After
Geeta Chhibber, MD, Virtua Health maternal-fetal medicine specialist, completed the amniocentisis and ultrasound, she sat down with McGroarty and her partner, Eric Kretz, to discuss what she had discovered. "I could see loops of the intestines floating in the amniotic fluid... right away, I knew it was gastroschisis," stated Dr. Chhibber.
What is gastroschisis?
Gastroschisis (pronounced gastro-skee?-sis) - its name is as daunting as the condition itself. Babies with this condition are born with the intestines protruding through a hole in the abdominal wall. It can be life threatening unless surgery is performed within hours after birth. On the bright side, the condition is almost always diagnosed early in pregnancy, so the parents, physicians and care givers can prepare well in advance.
"Gastroschisis is almost always detected via ultrasound when anatomy surveys are done between 18 to 20 weeks of pregnancy, but it can be seen as early as 12 weeks," stated
Ronald Librizzi, DO, chief of maternal-fetal medicine for Virtua Health and vice chairman of obstetrics and gynecology at Jefferson Medical College. "Diagnosing it early in the pregnancy gives the parents and doctors plenty of time to prepare."
According to
Thomas Kay, MD, chief of obstetrics for Virtua West Jersey Hospitals: "Abnormalities also can be picked up during triple screen testing which is done between 15 and 20 weeks. Triple screen tests measure pregnancy hormones and can signal whether a fetus is at risk for birth defects. If a fetus has an abdominal wall defect such as gastroschisis, the test will show elevated levels of a substance called alpha fetoprotein."
Moving forward after the diagnosis
After getting over the initial shock, McGroarty and Kretz's first step was to find out as much they could about gastroschisis. Dr. Chhibber spent a great deal of time explaining the condition and how it's treated. Its cause is unknown, yet it occurs in approximately one in 5,000 live births and more often occurs in babies born to younger mothers. "It's important to note there's nothing a mom can do to prevent this from happening," stated Dr. Chhibber.
Early in the pregnancy, McGroarty saw Virtua obstetrician,
Bernard Pekala, MD, once a month for prenatal care. Dr. Chhibber monitored the baby's condition via ultrasound every few weeks.
"McGroarty was considered high-risk because of the baby's condition, but she had no other complications. Therefore, her pregnancy was managed much like a normal pregnancy, with the addition of bi-weekly non-stress testing in the last two months," stated Dr. Pekala. With no restrictions, she continued working and tried to relax and enjoy her pregnancy.
Preparation for birth is a team effort
At 30 weeks, McGroarty and Kretz met with
Leonard Goldsmith, DO, Virtua's chief of neonatology, and
Michael Marchildon, MD, a pediatric surgeon with the Virtua/duPont Children's Health Program, to learn more about how the baby would be cared for after birth. "Knowing that your child will be born with critical needs can be very scary for parents," explained Dr. Goldsmith. "That's why it's important to talk to parents ahead of time to let them know how we'll care for their newborn in the hospital."
At Virtua, babies with special needs go immediately to the
neonatal intensive care unit (NICU) for care. A team of board-certified neonatologists, neonatal nurses, respiratory therapists and other caregivers monitors their breathing, circulation, and nutrition needs and provides highly skilled pediatric care. Pediatric anesthesiologists are also on hand to provide pain management before and after procedures.
Dr. Goldsmith took McGroarty and Kretz on a tour of the NICU and explained that their baby may have a complicated and lengthy stay, or that he may go home within a few weeks of birth. "We just can't predict what will happen until after the baby is born and we can assess the situation. But we try to prepare our parents for the best - and the worst," explained Dr. Goldsmith.
Surgery options offer hope
Dr. Marchildon, who has been a pediatric surgeon for more than 20 years, met with the parents to discuss gastroschisis and its treatment. "After birth, the neonatology team covers the intestines with a sterile pouch to protect them from infection and takes measures to stabilize the baby in preparation for surgery," explained Dr. Marchildon. "At that point, I assess the condition of the intestines and consider the best surgical approach. Because the intestines float freely in the amniotic fluid for several months, they may be inflamed or damaged. In some babies, portions of the bowel may need to be removed and the healthy sections stitched together." After the assessment in the NICU, Dr. Marchildon meets with the parents to further explain the surgery.
Depending on the baby's size and the condition of the intestines, there are a few different types of surgery that may be performed. According to Dr. Marchildon, who has performed surgery on more than 100 babies with gastroschisis: "The simplest approach involves replacing the organs in the abdomen through the defect in the abdominal wall and repairing the hole. Another approach involves constructing a 'silo' to protect the intestines while they are gradually pushed back into the abdomen over several days. The pouch is then removed at a second operation in approximately seven to 10 days."
"Dr. Marchildon's expertise in pediatric surgery, combined with the fact that the surgery could be performed right in the hospital at Voorhees, convinced us that Virtua was the best place to go for care," said McGroarty and Kretz.
Armed with a wealth of information on gastroschisis, McGroarty and Kretz had the tough task of waiting several more weeks for their baby's birth to really understand the condition they already knew so much about.
September 13, 2001: Delivery day
Just days after the world was shaken by the terrorist attacks on America, Diane McGroarty lay in a labor, delivery and recovery room at Virtua Voorhees riding out waves of intense contractions with help from an epidural block. The team of doctors who helped them prepare for this day all waited patiently for the little one's arrival.
At 12:11 pm, Stephen Kretz was born, weighing 6 pounds 2 ounces and measuring 19 inches long. He was placed on his mother's abdomen for just a moment, before he was taken away to prepare for surgery. The neonatology team was able to stabilize him quickly and he was in surgery within an hour. "Stephen's intestines were in very good condition, so I was able to easily replace them in the abdomen. I actually spent more time stitching the hole in a way that will leave Stephen with a very tiny scar," stated Dr. Marchildon.
Special care for a very special child
Stephen spent the next four weeks in the NICU under the watchful eyes of his parents and the NICU staff. "Our biggest concern was to get Stephen feeding normally as soon as possible," explained Dr. Goldsmith. At first, Stephen received intravenous (IV) nutrition. But with each week, Stephen received less IV feedings. By the fourth week in the NICU, he was successfully breastfeeding. And on October 15, just one month after he was born, Stephen went home.
Stephen's first few weeks at home were not easy. He wasn't gaining weight and he had blood in his stool. But a change in formula was what he needed to get him on the right track. "It's common for babies to have a difficult time eating because the intestines don't always work normally at first," noted Dr. Marchildon. "But someday, Stephen will eat pizza just like the rest of us."
His parents are thrilled at how far he's come: "Now he's a hearty eater - eating oatmeal, rice and fruits. But we're very careful in introducing new foods." Stephen also had surgery in February to correct an inguanal hernia, or weakness in the abdominal wall, which was unrelated to his gastroschisis.
"Overall, Stephen's a healthy, normal baby and we're so thankful for that," said his parents. "But we know that not every case goes as well as Stephen's did. Our best advice to parents going through something like this is to educate themselves and try to prepare for whatever may happen."
Virtua/duPont Children's Health Program: Leading-edge care right in your community
Virtua Health and the Alfred I. duPont Hospital for Children have joined together to bring high-level pediatric care to the children of South Jersey. This affiliation brings world-class pediatric specialty care in cardiology, gastroenterology, neurology, orthopaedics, endocrinology, pulmonology, and general pediatric surgery to Virtua Health. Now your family can access this broad range of specialty services while still enjoying the expert care of the doctors you know and trust. This affiliation is part of Virtua's commitment to providing the community with the highest quality medical services. You can make an appointment with a Virtua/duPont physician today by calling
1-888-Virtua-3 (1-888-847-8823).