Imagine being overjoyed at hearing that you are expecting your first child only to hear the first recommendation from a doctor is to terminate your pregnancy.
Katherine and Aaron Beach, residents of Fredrick, conceived their first child in March 2020. The strain of the pandemic did not hamper their excitement. The couple chose a midwife to see to Katherine’s prenatal care, with the hopes of an easy birth.
At 12 weeks, the happy couple visited a local hospital for what was expected to be a very normal ultrasound. That’s when they learned that their baby had a condition known as omphalocele, Katherine said.
An omphalocele is an abdominal wall defect where part of the bowl and sometimes other organs protrude from the abdomen. The condition happens early while the baby is forming, said Dr. Ken Liechty, fetal and pediatric surgeon and co-director of the Colorado Fetal Care Center.
Shortly after hearing that their baby had what this doctor considered a terminal birth defect, the doctor suggested they terminate the pregnancy, according to Katherine.
“She left the room. She didn’t explain what it was, that it was not terminal. She pretty much gave her opinion on what she thought we should do and then left,” Katherine said. “It was pretty disappointing that instead of being a resource for us, she was strongly suggesting termination.”
Katherine and Aaron left before the doctor returned and called their midwife. The midwife immediately suggested the couple seek another opinion and referred them to Children’s Hospital Colorado.
There, doctors were able to get a full evaluation for the family and baby, said Dr. Nicholas Behrendt, doctor of Maternal-Fetal Medicine, Colorado Fetal Care Center at Children’s Hospital Colorado.
“Our role, on the maternal-fetal medicine side, is, hopefully, to have a safe of a delivery as we possibly can, within Children’s Hospital,” he said, adding that most children’s hospitals don’t include a Labor and Delivery department.
Since the hospital helps deliver the baby, it allows doctors to begin care immediately after birth, Behrendt said.
The next day the Beaches were on the phone with the Genetics department and within a week they were meeting their doctors and forming a plan for the baby.
It is difficult to get a full and clear picture of a baby while in utero, Katherine said. “Those doctors (at Children’s Hospital Colorado) definitely gave us a better outlook and prognosis but also said that until she is born they can’t give us a clear picture of what recovery or repair looks like,” she said.
Katherine’s baby was diagnosed with a giant omphalocele which included the liver protruding from the abdomen, Leichty said.
The couple felt better with the new plan, although they knew risks and complications were still involved. The team of doctors not only had a plan A but also several backup plans in case something didn’t go as expected, Katherine said.
“One of the things we can assess prenatally is ‘are the lungs a good size,’ but we never know how they are going to function,” Liechty said adding the steps taken after the birth of a baby are greatly determined by the baby’s transition.
“It goes along with the notion that transition from fetal life to neonatal life is a pretty big transition for a baby. We have the potential to be surprised,” Berhrendt said. He said the team strives to have a care plan in place based on how they think things will go but have several contingencies prepared.
“They gave us hope that regardless of which route we have to go that we’d have a happy and flourishing baby, that we weren’t just setting ourselves up for a huge heartbreak once she was born. They didn’t have that negative outlook that the original doctor did,” Katherine said.
“Hopefully we were able to relieve some of the anxiety that a diagnosis like this carries because if you look, in general, at a medical textbook or literature on omphalocele, you’ll see a large swath of what can happen to these babies, before and after birth,” Behrendt said. “We were preparing them for a potentially long road but we were being somewhat positive that given the specialist that we have at Children’s that we would be able to handle this effectively to have a baby that turns out to do great.”
The baby was scheduled to be delivered via cesarean section on November 10, also known as the Marine Corp birthday. Aaron, a Marine, was excited to have his baby share the birthday.
Although scheduled for a cesarean section later in the day, Katherine’s water broke at 3:30 a.m. forcing over 12 doctors and staff to join her in the delivery room for the birth of her baby. Those doctors included Liechty, Behrendt, Dr. Regina Reynolds, a NICU doctor, NICU staff, and an OBGYN at Children’s Hosptial Colorado, Katherine said.
A typical concern of babies who suffer from omphaloceles is proper lung development. Katherine’s baby had small lungs, however, all the testing indicated the lungs to be “in the green,” Katherine said.
Baby Isabella, or Bella, was born and immediately rushed off to another room so doctors could stabilize her and begin treating the omphalocele, which only included her liver and some of her bowel, Katherine said.
The initial treatment included covering the omphalocele with plastic to keep it sterile. After the initial assessments, Bella was cleared to receive the first of five surgeries that would later correct the omphalocele, Katherine said.
“We were initially given an estimated NICU stay of two to six months and they said they probably wouldn’t be able to start her repair until at least day 10 (of Bella’s life) just because most babies aren’t strong enough to withstand that type of surgery right out of the gate,” Katherine said.
Bella only stayed in the hospital for 37 days and was released in time to celebrate her first Christmas at home.
Bella is now 5 months old and is 11 pounds. Despite still having a G Tube — a tube inserted into the stomach and aids in food consumption — she is crawling, rolling over, sitting in a chair and trying to walk, Katherine said.
“I keep thinking if I was in a different position in life, a single or younger mother, being given this advice, I might not have tried to find a second opinion and might have gone with the first doctor’s suggestion and missed out on having an amazing little baby,” Katherine said.
“In my field, if you have a pregnancy where you’re given some amount of news that you are not expecting, no matter what that news is, we encourage people to seek second or expert opinions to try to get as much information as possible,” Behrendt said.
“We want to provide hope to families going through this. We were originally given devastating news at a different hospital. It’s crucial to get a second opinion, especially when it comes to defect diagnoses. We sought out a second opinion and resources at a place where rare is common. Although this could have gone many different ways, we were provided with a plan for all outcomes at Children’s Colorado, with a kind, experienced and transparent team, and ultimately had an amazing experience; Isabella is a blessing,” Katherine said.
