It was the Friday before Christmas, 2012, and Nicole Wright had just had her 20-week ultrasound. She and her husband, Casey, were expecting their first baby.
But instead of enjoying the holidays, they suddenly found themselves meeting with specialists, doing medical research, and making some very hard decisions.
The ultrasound had revealed a problem. Their baby, a girl, had spina bifida.
“We were seeing the midwives at the Women’s Clinic of Northern Colorado,” said Nicole. “I was in the ultrasound room, and the midwives called in Dr. Kozak. She began to explain what we could do — places where we could look into surgery.
“They told us not to go home and Google it. But of course, we did.”
Spina bifida — which literally means “cleft spine” — is a condition in which the brain, spinal cord, and/or the protective covering around a fetus’ brain and spinal cord don’t develop completely.
According to the National Institute of Neurological Disorders and Stroke, it affects about 2,000 of the four million babies born in the U.S. each year.
Fortuitously, Dr. Michael Schneider had just opened the first fulltime perinatology clinic in northern Colorado. Schneider is an obstetrics physician who specializes in complicated, high-risk pregnancies. He contacted the Wrights and helped them consider their options.
“We were his first patients in Fort Collins,” Nicole said . “He told us about the possibility of in utero surgery.”
Schneider set up a February appointment for the Wrights at University of California-San Francisco hospital, which is where the first human fetal surgery was performed more than 30 years ago and the nearest hospital offering the procedure.
Doctors there explained the results of a study proving that babies who undergo an operation to repair the spina bifida defect while they are still in the womb develop better and have better neurologic outcomes than babies who have corrective surgery after birth.
“So we decided to go through with the surgery,” Nicole said . “Our baby — we named her Piper — was 24 weeks gestation. They only do the surgery between 21 and 26 weeks, and we thought it would give her the best chance.”
Piper’s surgery went well, but the incision in Nicole’s uterus didn’t heal completely. She was leaking amniotic fluid.
Back in Fort Collins now, Nicole was admitted to UCHealth Poudre Valley Hospital and put on bed rest. The goal: to make it to 37 weeks. But at 30 weeks, despite a long stretch off her feet and doctors’ best efforts to stop her contractions, Nicole went into labor. Because of the risks of vaginal delivery for both mother and baby, Piper was delivered by C-section.
“She spent a few days in the neonatal intensive care unit (NICU) at PVH, then she was moved to Children’s Hospital in Denver,” said Nicole. “She was just over three pounds when she was born, and she needed to be on oxygen.”
Nicole stayed with Piper in Denver during her month at Children’s Hospital, while Casey continued to work in Fort Collins and visit when he could. The separation and travel wore thin.
“It was really taxing on us,” said Nicole. “So we fought to get her back to PVH.”
“We really like to be able to have northern Colorado babies come back to PVH if they’ve had to be in Denver at Children’s at first,” said Dr. Amy MacRitchie, a PVH neonatologist who also practices at the University of Colorado Hospital and Children’s Hospital.
“It’s a huge help to families to stay in their own communities.” In late April, the Wrights got their wish and Piper was transferred back to the PVH NICU, where she stayed until the end of May.
Because Nicole had spent so much time at PVH during her pregnancy, she felt at home there.
“I knew the nurses at PVH, and we loved being back there,” she said. “We knew all the doctors. We loved the attention we got. I felt like I was more involved with Piper’s care at PVH. And I could go home for lunch.”
The PVH NICU is level III, staffed and equipped to routinely care for babies as young as 28 weeks gestation and as small as two pounds. It’s the highest-level NICU between Denver and Billings, Montana.
“We have five neonatologists on staff at PVH,” said Dr. MacRitchie, “as well as 14 neonatal nurse practitioners and Dr. Schneider, the perinatologist. Our NICU is so closely affiliated with Children’s Hospital, the University of Colorado Hospital, and Medical Center of the Rockies that it’s easy for us to all work together and collaborate on a patient’s care.
We also have a really great multidisciplinary approach that includes pediatricians, occupational therapy, physical therapy and other aspects of care.” In fact, the PVH NICU is in such demand that a remodel in early 2016 will nearly triple its size, from its current 7,000 square feet to almost 20,000.
The NICU can now accommodate 19 critically ill babies, but it will soon be able to care for 32.
Dr. Dan Satterwhite, PVH NICU Medical Director, said, “This expansion is needed not just to provide the most technologically advanced care to babies, but also to allow families to be more involved in their babies’ recovery.” In the revamped NICU, individual patient rooms will replace the current open floor plan.
Much like private hospital rooms for adults, the new NICU rooms will have ample space for families to spend time with their babies as well as sleep overnight.
Today Piper is a happy two-year-old. She loves slides, climbing up onto couches, and giving hugs and kisses. She can walk assisted by braces and a walker. Nicole and Casey like to put her in a backpack and take her hiking and camping.
Nicole Wright is thankful for the PVH NICU. “I had a voice there,” she said.
Learn more about premature birth, hear another family’s NICU story or to share your own.