By Jimmy Bellamy
The everyday, normal duties of parenting thrill Jake and Andi Jo Kurtz. Diapers, bottles and sleep deprivation are welcome in their household. It took a lot of work to become parents, and the months leading up to these moments were anything but ordinary.
Over a nearly two-year period, the Lino Lakes, Minn., couple tried to conceive a child, experiencing heartbreak in the form of an ectopic pregnancy, a pregnancy that occurs outside the womb, in the process. When the Kurtzes conceived again, their struggle wasn’t over. An ultrasound revealed that the intestines of their baby girl, already given the name Astella, had developed abnormally and were outside of her body.
“I noticed the tech just left the room without saying a thing,” Andi Jo recalled. “I said to Jake, ‘That was strange.’ ”
A high-tech ultrasound later revealed that the liver and stomach were misplaced, too.
“Our joy turned to fear,” Andi Jo said. “Our baby girl had a birth defect. The doctor went into details, but Jake and I just stared dumbfounded. We were referred to the best place: the Midwest Fetal Care Center.”
The doctors at the Midwest Fetal Care Center met the news undeterred even though no one in the field – anywhere – had ever seen her type of condition. Brad Feltis, MD, surgical director, and his team created a care plan that required new solutions to increase Astella’s chance to live despite her unprecedented condition. One of the challenges they faced was Astella’s size – she was a tiny baby, and there was a chance she might be born early.
Andi Jo said she and Jake hoped the delivery would coincide with the opening of The Mother Baby Center, a partnership between Children’s Hospitals and Clinics of Minnesota and Abbott Northwestern Hospital, in February 2013.
“After going to an open house at the center and touring the neonatal intensive care unit (NICU), we set an optimistic goal of delivering there,” Andi Jo said. “The high-tech delivery rooms were just feet away from the NICU. I wouldn’t have to be separated from my daughter after giving birth. I started a countdown for the grand opening.”
The Kurtzes made it in time. But without surgery immediately after birth, doctors said, Astella stood zero chance to survive. The team at the center in Minneapolis prepared for the life-saving procedure.
On Feb. 23, 2013, Andi Jo gave birth to 4-pound, 14-ounce Astella. She spent the first five hours of her life in surgery, where a plastic pouch called a silo was placed over her abdominal area and exposed organs.
With the silo in place, a long-term solution became the priority. Dr. Feltis consulted with experts who specialized in burns and reconstructive surgery, and eventually he developed a procedure using synthetic skin to cover and protect Astella’s organs. The hope was to put her organs back into place and grow skin, but the first part wasn’t possible because the birth defect of her abdominal wall was simply too large. Instead, when Astella was 1½ months old, a surgery was performed to replace the silo with a wound vacuum to help promote skin growth and prevent infection. This device remained in place for several months.
In what the Kurtzes call a miracle, Astella since has grown her own skin. The initial layer will cover and protect her organs until she’s 6 years old. She will then have a third operation, this time to move her abdominal muscle over her internal organs, close her abdomen and remove all of the scar tissue that became that first protective layer of skin.
“The care plan that was developed was truly unique,” Jake said. “Our team at the Midwest Fetal Care Center didn’t give up. It’s amazing to think of how many people put their heads together to develop the very best plan for our baby – as if she was the only patient they had.”
“I remember our neonatologist, Dr. Ellen Bendel-Stenzel, telling us, ‘We see miracles here every day. Astella could be one of them. We’re going to do everything we can to fight for her.’ ”
The Kurtz family case was so rare that Feltis expects it to stand alone, but it is an example of the amazing outcomes that can be achieved with careful planning and a team of experts.
“We had never seen anything like this before,” he said, “nor do we expect we’ll see anything like it again.”
Astella spent 140 days recovering in the NICU. Andi Jo said she and Jake were inspired by stories on the Wall of Hope, a wall displaying the photographs and stories of former NICU patients.
“We read every story on that wall,” Andi Jo said, “which made us realize that this would not be our life forever. Maybe Astella’s story would someday be on that wall.”
Jake said that simple things, like watching Astella eat, are a miracle.
“Now we are just struggling with the normal parenting things that happen when you have a healthy kid. And we couldn’t be more thrilled,” he said. “Astella will need ongoing medical care, but given where she started, she’s doing remarkably well.”
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.