Pictured above: Jamie and Denny Fulkrod, with their daughters Emerson (left) and Elliot, consider the teams at the Perinatology Center and Newborn Intensive Care Unit to be family.

Complications that arise in pregnancy can be frightening for expectant parents. For even the most rare and complex neonatal conditions, Edward-Elmhurst Health has a team to provide special care for moms and their babies led by perinatologists, doctors who focus on high-risk pregnancies.

Edward Hospital has the Perinatology Center and Elmhurst Hospital has the Maternal Fetal Medicine (MFM) Clinic, bringing an experienced medical team to pregnant women close to home. Doctors focus on many risks, such as chorionic villus sampling, amniocentesis, first trimester screening, fetal echocardiography, detailed fetal ultrasound screening and consultation for maternal or fetal problems.

The team collaborates to provide individualized care and includes: perinatologists, nurses, ultrasonographers, genetic counselor, social workers, perinatal sonographers, neonatologists, pediatric cardiologists, pediatric gastrointestinal surgeons and other pediatric specialists. What they do is personal and memorable, working toward positive outcomes for mom and baby.

Screening to diagnosis

There is a spunky, hilarious, smart little girl named Emerson Fulkrod who is fascinated by all things medical and loves to hear about her birth and her time spent in the Edward Hospital Newborn Intensive Care Unit (NICU). Her story starts in the Perinatology Center when her mom, Jamie, had a 20-week anatomy scan.

Jamie, who was 35 years old at the time and conceived via IVF (in vitro fertilization) with her husband, Denny, considered the meeting a formality based on her age. All women older than 35 during a pregnancy are referred to MFM.

During the scan, Jill Moran, M.D., an independent MFM specialist on the medical staff at Edward and Elmhurst Hospitals, noted the baby’s stomach was not robust, the baby had one kidney and that kidney had a cyst. This first encounter and the results meant Jamie and her baby would be closely monitored by the MFM team.

“The first appointment with Dr. Moran at 20 weeks was terrifying,” Jamie remembers. “Each appointment got easier and easier as we knew Em would likely survive, but we did have concern as we weren't certain how severe her condition would be and what/how many surgeries she would need once she was born. Our goal was to make it to 36 weeks for delivery.”

By 28 weeks, genetic screening was completed and more scans continued to show similar issues, along with an increase in Jamie’s amniotic fluid level and shortening and funneling of her cervix.

At the 28-week ultrasound, Kevin Madsen, M.D., an independent MFM specialist on the medical staff at Edward and Elmhurst Hospitals, suspected that Emerson’s esophagus was not connected to her stomach and she, therefore, was unable to swallow the amniotic fluid, making her stomach small and not very visible on a scan.

That would also explain why Jamie’s amniotic fluid level was so high and why her cervix had shortened and funneled as a result of the pressure from the fluid. Basically, Jamie’s body thought it was time to deliver and began contracting because her uterus was so large, like a full-term baby. Jamie was placed on strict bedrest at home, with visits to the MFM office and the Labor & Delivery triage as needed.

Jamie’s 34-week appointment ended in triage with contractions and an admission to Antepartum for a few days. At that point, Jamie met with Deanna Duray, M.D., a neonatologist in the NICU, to talk about the expected care of Emerson in the NICU. Later that week, the induction process started based on the monitoring of Emerson’s heart rate.

“Shortly after birth, Dr. Duray came in to talk with us again,” Jamie says. “She explained everything very thoroughly and calmly. She was optimistic that the surgery would go well and that we would take Emerson home after some time in the NICU. She confirmed that Emerson has only a single kidney, she has a TEF [tracheoesophageal fistula, an abnormal connection between the esophagus and trachea] and esophageal atresia (improperly developed esophagus) that would need surgical repair sometime in the next week, and that she has two misshapen vertebrae.”

The combination of Emerson’s defects led to the diagnosis of VACTERL. Emerson has the V (vertebral), TE (trachea/esophageal and R (renal) part of the diagnosis. She does not have A (anal), C (cardiac) or L (limb) issues, but only three conditions are required for diagnosis.

Jamie adds, “While her condition was incredibly scary, we were very aware that the diagnosis/prognosis could be much worse and we were thankful that she was most likely going to be okay.”

The surgery was performed by Ami Shah, M.D., and Mary Beth Madonna, M.D., pediatric surgeons at Edward Hospital. Emerson was intubated for the surgery, and they found that her airway was very narrow. Manali Amin, M.D., an independent pediatric otolaryngology and otolaryngology (ENT) specialist on the medical staff at Edward Hospital, then became involved.

Surgery was a success. Emerson was in the NICU for 46 days, as she tried to learn to eat by mouth. Eventually she had a gastronomy tube (g-tube) placed to help her grow and develop.

Since going home, Emerson has had a few surgeries for g-tube removal, viral infections with respiratory distress and airway scopes. Her spunk has remained through it all.

Pictured above: Emerson spent 46 days in the NICU, diagnosed with a single kidney, tracheoesophageal fistula, esophageal atresia and two misshapen vertebrae. 

Second time around

Jamie was back in the MFM office for her second pregnancy, at 20 weeks and 32 weeks for anatomy scans. Dr. Madsen gave the parents the good news that baby Elliott was a "normal, boring, textbook" pregnancy.

“Most of our time with Dr. Madsen was actually spent talking about Emerson and catching up on his kids. After Em was born, I said we would not be having any more children. Dr. Madsen encouraged us to consider having a second baby as the likelihood of a baby with similar issues was very, very small,” Jamie remembers.

Bob Covert, M.D., an independent neonatologist and medical director of the Edward Hospital NICU, also took care of Emerson during her NICU stay. Jamie says “Dr. Bob” has become like family and the connections she and Denny made on their journey to and into parenthood are lifelong.

Dr. Covert was at the delivery of Elliot and Jamie could not think of anything better. Because of Em's interest in all things medical, Dr. Bob gifted her his personalized stethoscope. He also passed along his Emerson Lake & Palmer vinyl album, given her name and his love of all 1970s music.

Dr. Covert says, “When I first started at Edward Hospital 25 years ago, moms like Jamie would be transferred to another facility because MFM did not have the team to care for them. Emerson also could not have been delivered here because our NICU was not a Level III at the time and lacked additional pediatric surgical support. The partnership with MFM means moms can get quality care close to home with delivery to a highly specialized NICU.”

Contact the Perinatology Center at Edward by calling 630-527-3278. To reach the Maternal Fetal Medicine Clinic at Elmhurst Hospital, call 331-221-3020.

Learn more about the NICU and Special Care Nursery at Edward-Elmhurst Health.