At her 26-week prenatal visit on Feb. 11, 2011, Sarah Guenther appeared to be having a normal pregnancy.
Two years had passed since her daughter, Lucille, had been born four weeks premature as a result of preeclampsia, a condition of pregnancy in which high blood pressure and protein in the urine develop after the 20th week. She knew she was at high risk to have preeclampsia again, but since a second instance of preeclampsia typically occurs later in pregnancy and is not as severe, Sarah, radiology secretary at Finley Hospital in Dubuque, wasn’t concerned.
Four days later, however, Sarah woke with the telltale signs of preeclampsia—her hands and face were swollen and she had rapidly put on weight. She was rushed to Finley Hospital where nurses gave her an IV and immediately prepared her for a trip to University of Iowa Hospitals and Clinics by ambulance. Doctors and nurses knew that Sarah needed the type of high-risk OB care that UI Hospitals and Clinics was able to provide.
With more than 14 weeks of pregnancy remaining, “the baby was coming too early, I knew they wanted her delivered in Iowa City,” Sarah says. “They knew the baby’s chances would be better here.”
Jonathan Klein, medical director of the Neonatal Intensive Care Unit (NICU) at UI Children’s Hospital, knows just how much better a premature baby’s chances are for a good outcome following birth at UI Children’s Hospital.
Klein says babies born at 24 weeks have an 82 percent survival rate at UI Children’s Hospital, compared with the 60 percent national average, according to figures from the Vermont Oxford Network. Each extra week in utero means a higher success rate: at 25 weeks the baby has an 86 percent chance of survival, compared with 76 percent nationally; at 26 weeks it’s a 90 percent chance of success, compared with 84 percent nationally; and at 27 weeks it’s 96 percent, compared with 89 percent nationally.
Sarah was en route to UI Hospitals and Clinics within an hour after arriving at Finley. When she arrived, doctors and the high-risk OB team worked with Sarah immediately, hoping to delay birth until at least 28 weeks. Experts from both the high-risk OB team and the NICU stopped in to talk to Sarah and her husband, Jeremy, daily, letting them know what to expect if Penelope were to be born that day and to help them prepare for what might happen.
Sarah and Jeremy were willing to hope but they weren’t optimistic.
“Having had preeclampsia before I knew what was going on and I knew it was not going to be good,” she says. “I knew the odds of me making it much farther in my pregnancy were not very good.”
Baby Penelope was born just three days after Sarah arrived at UI Hospitals and Clinics, weighing a mere 1 pound, 6.9 ounces, and was only 12 inches long—about the size of a Barbie doll. It was enough time to give two doses of steroids, which help the lungs and brain to mature faster and improved Penelope’s chances of survival.
“I didn’t know what my options would be, whether she would make it,” Sarah says. “I was glad to find out 26 weeks was a good number.”
As with every premature baby, all of Penelope’s organs needed assistance to function. She was fed intravenously and needed breathing support. When Penelope was 17 days old, James Davis, a pediatric cardiothoracic surgeon, performed heart surgery to close a patent ductus arteriosus (PDA), a common occurrence in babies born prematurely in which a fetal blood vessel that allows blood flow from the heart to bypass the lungs before birth fails to close after birth.
The vessel typically closes within hours to a few days after birth as part of the normal changes as the baby’s body adjusts to life outside the womb. In some babies the blood vessel remains open, putting strain on the heart by increasing blood flow to the lungs and pressure in the lung arteries.
Klein says Penelope still weighed less than two pounds at the time of surgery, which took less than an hour.
A few weeks later Penelope developed another complication of prematurity: staff discovered she had necrotizing enterocolitis, an inflammatory infectious process of the intestine. She needed to go without feedings for a full week, nourished only through IVs. Fortunately the condition improved with antibiotics and bowel rest, and surgery was not required.
Sarah has connected with other NICU families, and it helps to be able to share experiences.
“Being a NICU parent is so unplanned. There’s a steep learning curve. It helps to learn from other parents who have been there before. It makes the unknown not so scary,” Sarah says. “As time has gone on, it’s become easier to be here. The first two days were very hard.”
Penelope remains in the NICU at UI Children’s Hospital—the only Level III C NICU in the state of Iowa. That designation—the highest level available—means the unit is staffed by pediatric specialists specially trained and equipped to care for premature babies as well as those who are critically ill or born with birth defects. The NICU team—neonatologists, surgeons, nurses, nurse practitioners, nutritionists, respiratory and rehabilitation therapists, pharmacists, imaging specialist, social workers, anesthesia specialists, and others are on-site around the clock.
Presently, Penelope weighs nearly 8 pounds. She has developed retinopathy of prematurity (ROP), a condition that can lead to blindness. Penelope is not in danger of blindness, but this development has extended her stay. She deals with issues related to bottle-feeding; the NICU team is trying to decide if she will be going home with a feeding tube placed surgically in her abdomen. Penelope will have surgery to repair a hernia; if the feeding tube is required, it will be placed during the same surgery.
The hope is that Penelope will be going home in time for her sister’s third birthday in mid-July.
“She’s a good fighter,” Klein says. “She’s gone through a lot and still has a long way to go, but she’s doing well.”
During the initial weeks, Sarah stayed at the Ronald McDonald House near the hospital and spent her days with Penelope. She had to return to work in early May to keep their insurance from lapsing, so she is home for two days each week. Jeremy’s new “normal” includes returning to work at Roeder Outdoor Power in Dubuque and taking care of Lucille while Sarah focuses on caring for Penelope.
Sarah says she has to remind herself sometimes just how far her young daughter has come.
“All the changes you go through are so subtle you have to remind yourself just how significant they are,” she says. “We’re not talking about heart surgery anymore, so that’s something. Or maybe in a couple of days we can move to a crib, or sometime we can start wearing clothes. None of the changes seem very drastic, so it’s hard to see from day to day what progress has been made. But when you take a step back and look at it all, she really has come a long way.”
She cautions other parents to know what is available in the chance of the unthinkable happening.
“Everybody thinks it won’t happen to them. We were fine—until we weren’t,” Sarah says. For some of the families she met in the NICU, “They were fine and had normal pregnancies until an hour before birth.”
“It’s scary enough to deliver this early. To have your baby sent to another hospital right away would be awful. Being separated and not knowing baby’s condition is the scariest thing you can imagine,” she says.
Sarah has “built a rapport with the nurses. They all really care about the outcomes here. It’s not just about the medicine.”
That relationship started the day they arrived in Iowa City, Jeremy says, and continued throughout Penelope’s stay.
“I believe completely that at no point in this process could any decision have been made any better,” he says. “I felt the entire time that the staff struck a perfect balance between including myself and Sarah in the decision-making process, and acting with appropriate swiftness during a changing and serious situation.”
“Every day I am more and more thankful that we are at UI Children’s Hospital,” Sarah adds. “I love meeting new parents and giving them hope by sharing our story—it’s not just my story, or Penelope’s story. It’s all of us, my whole family.
“We have each been changed by this experience, and if I hadn’t been transferred to Iowa City, this story would not have gotten its happy ending.”