Sitting together in their room in the NICU, 21-year-old Rachel Sommerfelt breaths a little easier these days. And so does her son Abel whose name coincidentally means breath. He’s no longer on a ventilator and each day that he shows improvement is one day closer to the family going home.
“I’ve learned to not pity myself,” says the new mom. “I could be in a much worse situation. I’m grateful I still have Abel.”
Facing the unexpected
Like so many new parents, Rachel and her husband Colton were filled with anticipation and excitement as they drove from their home near the oil field of North Dakota for her 20-week ultrasound in Bismarck. The ultrasound delivered the news that they were having a little boy. But their joy quickly turned to concern. They also discovered at that appointment that Abel had an abdominal wall defect.
“It was a very bittersweet day for sure,” recalls Rachel. “We didn’t know how bad it was. We didn’t know what it was. We were told it could possibly be life threatening. We left that appointment and I just bawled.”
Abel had an omphalocele, something that occurs in only one in five thousand pregnancies. “As the intestines grow and develop, there is no room for them in the abdomen,” explains Sanford Children’s pediatric surgeon Jon Ryckman, MD. “So they grow outside the body in a sort of sac covered by the umbilical cord.”
“You could just see this ball of something floating above his belly on the ultrasound,” Rachel explains. She was immediately referred to the Sanford Fetal Care Center in Fargo and Sioux Falls and perinatologist Peter Van Eerden, MD.
Rachel would travel to Fargo once a month till she was at 32 weeks to see Dr. Van Eerden who was working with Sanford physicians in Sioux Falls to determine a care plan for Rachel and Abel when he was born. “Having the coordination of care just makes for a better outcome ultimately,” explains Dr. Van Eerden. “The goal is to have the baby delivered where it will be treated to avoid travel and optimize outcomes.”
Concept of Care
Sanford Fetal Care Center isn’t an actual place. It’s a concept of coordinated care. And it’s the only one of its kind in the region made up of maternal/fetal medicine perinatologists, pediatric subspecialists and palliative care.
“Obviously a mom with a high-risk pregnancy or fetal abnormality is going to be very concerned about her baby and the fact she can go someplace close to home to get her questions answered and talk to experts is very helpful to easing the emotional stress of what can be a difficult time,” says Dr. Ryckman.
“It was so nice that my doctors in Minot knew where I could go to get the specialties I needed,” says Rachel. “I knew Abel was in a good place and had the specialties needed. I got to know Dr. Ryckman even before I had Abel.”
Rachel delivered Abel through a C-section on November first. For one week, Dr. Ryckman worked to reduce the size of the omphalocele by slowly pushing more and more of it into the abdominal cavity. A week later he had a successful 5-hour surgery to repair the omphalocele.
Unfortunately he wasn’t out of the woods. He developed respiratory issues because his lungs weren’t accustomed to having additional organs in the abdominal cavity. He was on a ventilator for a month. As a result, he’s developed an oral aversion and won’t eat anything through his mouth. He’s now seeing a physical and speech therapist to get him eating on his own. He also has a heart murmur, which isn’t uncommon. Again, the care was there for Abel and Rachel thanks to the Fetal Care center. “He’s such a good baby,“ she says. “He hardly ever cries. He’s content. I couldn’t ask for a better baby.”
Ready to be a family
Abel’s dad had to return to work in the oil fields, while he and Rachel remain at the NICU. Rachel misses her husband and is ready for the day when they can be united as a family. “I’m just looking forward to living a normal life. I love Sioux Falls and this hospital is amazing. The doctors and nurses are absolutely great. It’s more than I could ever ask for,” Rachel says, “but I am so ready for a normal life and a normal schedule.”
Even though she’s far from home, Rachel says she realizes she could be much further. And there’s no place she’d rather be which is the ultimate goal of the Fetal Care Center. “To me, having everything here close to home is very helpful,” says Dr. Ryckman. “For the most part, people can get their care here and the babies are safe. They get world-class care at Sanford. You don’t have to go to a big city far away from home to get the appropriate care.” Which is a breath of fresh air for both mom and Abel.
Posted Date: February 2013