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Ian’s Story: Treating an omphalocele at the Midwest Fetal Care Center

Ian Kempel was born with an omphalocele. His story was featured on the TV show “The Doctors.” (Photo by Jessica Person / First Day Photo)
Leah and Todd Kempel were excited to find out they were expecting a baby boy in July 2014.

Like most couples, Hopkins, Minn., residents Leah and Todd Kempel expected to have a healthy and orderly pregnancy. They were relieved and excited after finally receiving a positive pregnancy test and soon after began planning an unmedicated, natural birth for their first child.

It wasn’t until a routine 20-week ultrasound to find out the sex of their child (a boy!) that they thought their pregnancy could be anything but “textbook.”

Watch the Kempels share the story of their pregnancy:

Meet Leah and Todd Kempel from The Mother Baby Center on Vimeo.

Ian’s ultrasound

“There’s a problem,” the ultrasound technician explained. “Some of his organs are outside his body.”

“Wait, what? I hadn’t even considered that there would be anything wrong,” Leah thought. “The pregnancy was progressing normally, and I was feeling pretty good – I didn’t even have any morning sickness during the first trimester.”

Their obstetrician referred the Kempels to the Midwest Fetal Care Center in Minneapolis. There, further testing revealed that their baby boy had an abdominal wall defect called an omphalocele, as well as a ventricular septal defect (VSD) characterized by a hole separating the two lower chambers of his heart.

Impacting about one in 5,000 births, an omphalocele results when the muscles of the abdominal wall do not close properly. Leah and Todd’s baby’s liver, stomach and intestines were growing in a sac outside his body covered by a thick membrane. Baby Kempel’s omphalocele was about the size of a small melon and considered “giant.”

Baby Ian was born with an omphalocele, where a number of his organs formed in a sac outside his body.

“At the Midwest Fetal Care Center, we see approximately 10-12 omphalocele cases each year – more than any other center in the region,” said Brad Feltis, MD, PhD, surgical director at the Midwest Fetal Care Center.  “That volume makes us one of the busiest and most qualified programs in the country to treat this condition.”

“Thankfully, the hospital has scheduling coordinators who planned our visits for us, so all we had to do was show up. We met with Dr. Feltis and a cardiologist very quickly and they­­ developed a plan for us and our baby right away. Throughout our appointments, it was reassuring to see that our baby boy was growing and moving regularly despite having his organs outside his body,” said Leah.

The Kempels were further reassured that they were in good hands upon touring The Mother Baby Center, and Children’s Hospitals and Clinics of Minnesota, the facilities where their baby would be delivered, have surgery and recover.

“Though we didn’t know exactly what surgeries our baby would need once he was born, we knew a stay in the neonatal intensive care unit (NICU) was likely,” said Todd. “It was helpful to meet with the neonatologists and the teams that would be caring for him after he was born.”

“Leading up to labor, we tried to keep a sense of normalcy and did the typical things that expecting couples do,” recalled Leah. “We picked out a name – Ian – and set up the nursery even though we didn’t know when he would finally be home to enjoy it. We really had to take things day by day, preparing the best we could for the unknown ahead of us.”

Baby Ian after his first surgery to repair his omphalocele

Leah gave birth to 5-pound, 11-ounce Ian Shinji Kempel on July 14, 2014, through a scheduled C-section at 39 weeks. Immediately after, he was admitted to the NICU at Children’s where his care team assessed his condition to determine next steps.

“Though we evaluate each omphalocele patient on a case-by-case basis, typically we take a staged approach to return the contents of the abdomen back into the body,”explained Dr. Feltis. “The amount of skin the baby has around the omphalocele often helps us determine our approach.”

Dr. Feltis and Dr. David Schmeling, Children’s chief of surgery, performed Ian’s first surgery one week after he was born. The procedure included removing the membrane around the sac, placing as much liver and bowel back into the abdomen as possible, and adding a plastic pouch called a silo bag over the remaining membrane. In the following weeks, a second and third surgery attempted to close the muscle and the skin over the omphalocele.

“It was tough seeing our newborn baby go through such complicated surgeries, but he handled them like a champ” recalled Todd. “He did have a minor setback after his third surgery, where the stitches had to be undone to relieve pressure in his abdomen, but he continued to show everyone how strong he was and rebounded pretty quickly.”

Ian continued to recover in the NICU where eventually his ventilator and catheter were removed. Leah and Todd were finally able to hold him and he began to be more alert and awake. He was able to start taking breast milk and his digestive system was functioning properly, giving his parents plenty of experience changing diapers.

“It was exciting to see Ian meeting so many milestones,” said Leah. “I learned how to help change the dressings on his abdomen and was very involved in the feeding process. In early September, he was moved to the Infant Care Center – one step closer on the path toward going home.”

A few days before Ian had the green light to go home, he had a fourth but common surgical procedure for an inguinal hernia, where soft tissue protruded through a weak point in the abdominal muscles. He may also need surgery down the road for his VSD. Eventually, as baby Ian grows and heals, Dr. Feltis will perform the final surgery when Ian approaches kindergarten, where his abdomen will be completely closed and he will receive his own custom-made belly button, a Dr. Feltis original.

In the meantime, Ian will be able to do the majority of things a child born without any complications would.

“Ian’s prognosis is very positive and we expect he’ll catch up to his aged-matched peers. It won’t be long before he’s crawling, walking and running – pretty amazing for a baby who had three surgeries within the first three weeks of his life” said Dr. Feltis. “Each omphalocele case we see is different and Ian had a few bumps in the road, but he has really impressed us with how far he has come in such a short amount of time.”

The best milestone Ian has met was the day Todd and Leah finally welcomed him home on Sept. 25.

Todd and Leah welcomed Ian home on Sept. 25, after a nearly three-month stay in Children’s neonatal intensive care unit.

“Ian came home with a few more accessories than a typical baby, including oxygen tanks and a pulse oximeter, but just having him here and safe in less than three months is amazing,” described Leah. “He’s settling in well and really enjoys being read to and watching us move around the house. It is fun watching him do things that any other baby his age would be doing, despite all that he’s been through. Todd and I are so grateful for medical innovation that has allowed us to start our new family despite the atypical circumstances.”

To see more about Ian’s story, watch the Kempels’ national TV interview on “The Doctors” or view our video series:

The Midwest Fetal Care Center is a collaboration between Abbott Northwestern Hospital and Children’s Hospitals and Clinics of Minnesota. As the only advanced fetal care center in the upper Midwest, the Midwest Fetal Care Center provides maternal and fetal care when a high-risk pregnancy poses challenges