A parent never wants to see their child sick in the hospital, yet sometimes complications arise. Journey into some of the best neonatal and pediatric care centers in our region by following the story of Dorothy, a baby born premature.
Dorothy Whitaker was only four days old when she had her first surgery. Born just under a month early, the preemie entered the world with a birth defect – a kind that affects only one in every 5,000 babies.
Her parents didn’t expect the whirlwind of events that immediately followed.
“I ended up needing an emergency Cesarean-section, which was overwhelming at the time, but I just kept thinking ‘It’ll be OK, she’ll be here,’” says Karissa Gonyo, Dorothy’s mother. “None of her ultrasounds ever looked bad, so I had no idea there was going to be anything wrong.”
Dorothy’s birth defect was an imperforated anus, which is a blocked or missing rectal opening. Because she was born premature, Dorothy also had complications with breathing.
“My OB-GYN said Dorothy had a 50 percent chance of having fully developed lungs at her age of gestation. Well, it was obvious her lungs weren’t on the stronger side of that,” Karissa says.
She watched as Dorothy’s belly moved “all the way in” and “all the way out” as the newborn attempted to breathe.
“It looked like someone was giving her CPR without anybody touching her,” Karissa describes.
Dorothy was transferred to the Neonatal Intensive Care Unit (NICU) at Mercyhealth Hospital-Rockton Avenue, in Rockford, where she stayed for about two weeks. At four days old, she had her first surgery to receive a colostomy bag, which collected the waste that would normally pass through her rectum and anus. Her breathing also became stronger with sustained respiratory support.
This care was possible since Dorothy was in a Level III NICU, the highest level of neonatal care available. Neonatologists in a Level III NICU are capable of caring for newborns that are critically ill or require surgical intervention. Mercyhealth is the referral center for the 11-county northern Illinois region, caring for an average of 39 babies per day, with room for up to 52 babies.
“We have babies who are on a ventilator for days, weeks, even months sometimes,” says Dr. Gillian Headley, a neonatologist and director of Mercyhealth’s NICU. “We provide the highest level of respiratory support through multiple methods.”
These methods include continuous positive airway pressure (CPAP), a ventilator that applies mild air pressure on a continuous basis, in addition to other specialized ventilators.
Neonatologists at Mercyhealth can also administer whole-body cooling, which involves using a water-filled blanket to slowly lower a newborn’s temperature. This slows metabolic processes and helps protect the newborn’s brain. Whole-body cooling may be applied when a newborn experiences reduced levels of oxygen (hypoxia) or blood flow (ischemia).
Karissa and her fiancé, Robert “Bobby” Whitaker, are thankful their daughter received the intensive care she needed at Mercyhealth’s NICU.
“Taking your baby home is a parent’s greatest desire,” Headley says. But, there was a time when the outcome of premature births wasn’t as favorable.
“When I went to medical school, a baby less than 28 weeks old was nonviable. Now, a 28-weeker is just a regular preemie,” Headley says. “I’ve been at Mercyhealth 17 years, and to see these 23- to 25-weekers do as well as they do now, without all the chest tubes and devices, I think it’s amazing. Each one of them is a miracle.”
Mercyhealth’s NICU will relocate to its new hospital on Riverside Boulevard, in Rockford, once construction is complete. The new unit will have more space for families to be in the room with their babies.
“That’s something that we’re excited about, since family involvement has such a profound effect on the neurodevelopment of these babies,” Headley says.
And, there will be more space for families to support one another.
“One of our biggest achievements over the past couple of years has been developing a parent advisory board – a group of former NICU parents who advise us, from their point of view, on how to improve – and from that we’ve learned how much parents appreciate the ability to support one another when their children are in the NICU,” Headley adds.
The new hospital will also continue to incorporate a Small Baby Unit: a special unit within the NICU where babies less than 27 weeks old are cared for.
“Truly, we have a great ability to care for the tiniest and sickest babies,” Headley says. “We have a great group of physicians and nurses who work as a team, and we’re always trying to make things better.”
From the NICU to the PICU
Dorothy’s NICU days were behind her, and her parents couldn’t be happier to have their daughter at home. Soon, however, Dorothy’s breathing became complicated once again.
“She was home two weeks to the day and she just stopped breathing,” Karissa says. “We got in the car and drove her right to the nearest hospital.”
Terrified, Karissa watched as her daughter “coded,” or went into cardiopulmonary arrest, twice. Crash carts appeared on the scene as doctors worked to revive the now one-month-old Dorothy.
Dorothy was intubated, a process that involved inserting an endotracheal tube through her mouth and into her airway so that she could be placed on a ventilator. Then, she was transferred back to Mercyhealth by ambulance, since winds were too strong that day to travel via helicopter from McHenry County, where Dorothy lives.
This time, she went to Mercyhealth’s Pediatric Intensive Care Unit (PICU).
“We stayed there for almost five weeks, and she was pretty much intubated the entire time,” Karissa says. “I stayed with her the whole time; I didn’t go home. Bobby drove back and forth to work out in Palatine [Ill.]. We’re super thankful for the Mercyhealth guest center, which helped out a lot. It’s especially great for families who live far away from the hospital.”
While in the PICU, Dorothy was diagnosed with severe pneumonia. Doctors discovered both of her lungs had collapsed.
Dr. Joel Manaligod was one of the physicians who cared for Dorothy. As a pediatric intensivist and the medical director of Mercyhealth’s PICU, he is specially trained to care for critically ill children.
“The PICU takes care of infants, children and teenagers,” Manaligod says. “The NICU cares for babies who are born and haven’t been discharged from the hospital yet. If an infant who has been home for a while needs hospitalization, they will be cared for in pediatrics, or, if sicker, the PICU.”
In a year, the Mercyhealth PICU team treats about 350 patients. Manaligod observes that wintertime is busier with patients admitted for pneumonia, usually from viral infections. Summertime can also get busy with trauma-related patients from bike accidents, car accidents or gunshot injuries.
Whenever a patient requires extra monitoring or interventions, they are transferred from the general pediatric unit to the PICU, Manaligod says.
“Anyone who is at risk for having their organs fail – it could be their heart, lungs, brain – they would need extra monitoring and interventions with higher technology,” Manaligod says.
“It’s really important that families can come to us versus going to Chicago or Madison,” he adds. “Any delay in care to these children can affect their outcome, so having pediatric intensivists in town is important for our community.”
As Dorothy received treatment in the PICU, Karissa felt calmer as information was relayed to her in great detail.
“The nurses and doctors explained everything very well,” she says. “I knew and understood what procedures Dorothy was getting – she needed a spinal tap, daily X-rays, a central line catheter, just a lot of other things – but the staff went above and beyond everything we could imagine. They were kind to us, and if I didn’t understand, they explained. We became family at that point.”
Dorothy turns one year old on Jan. 13, 2018. So far, in less than a year, she has had four surgeries all together.
Her breathing is now under control with the use of daily inhalers. She still has trouble going to the bathroom and takes Miralax and other medicines to help. In addition to her birth defect and breathing complications, Dorothy also deals with genetic anomalies.
“She has issues with her thumbs and her left kidney was swollen, so right now we’re just trying to figure everything out,” Karissa says.
But, despite everything, Dorothy is reaching normal milestones.
“We worked with early intervention and she just learned how to sit up by herself,” Karissa says. “She has a few delays, but she’s getting there. She’s showing us a thing or two about being strong.”
In the Mercyhealth gift shop, Karissa and Bobby stumbled across a “Wizard of Oz” plaque that they bought for their daughter. They look at daughter Dorothy’s life as her own journey down a yellow brick road to healthiness.
“Despite everything, she’s a really happy baby,” Karissa says. “She smiles a lot. She’s so expressive now, and she just tells the story with her eyes.”
Perinatal Care at SwedishAmerican Hospital
For many years, SwedishAmerican, a division of UW Health, has been a Level IIE hospital for perinatal (mother-baby) care. This means SwedishAmerican staff can provide care to moderate-risk women and babies, including babies born as early as 32 weeks. Local, board-certified maternal-fetal medicine specialists and neonatologists, as well as obstetricians and pediatricians, provide this care.
“There is a common saying in medicine that children are not miniature adults,” says Dr. Michael Polizzotto, chief medical officer of SwedishAmerican. “They have medical issues and needs that are unique to their stage of life. Our mission at SwedishAmerican is ‘through excellence in health care and compassionate service, we care for our community.’ Neonates and children are part of that community which we serve.”
The Illinois Department of Public Health (IDPH) sets standards for and periodically evaluates the perinatal care provided at hospitals throughout the state. IDPH recognizes five levels of perinatal service, from “no obstetrical care available” (Level 0) through “able to treat to the sickest/most at risk mothers and babies” (Level III).
SwedishAmerican is working to be able to provide Level III care in the near future.
“This is made possible, in part, by our partnership with UW Health, which enables us to draw upon the expertise of the nationally recognized American Family Children’s Hospital,” Polizzotto says. “Pediatric subspecialists – including pediatric cardiologists, pediatric surgeons, pediatric urologists and pediatric ENTs – have regularly scheduled clinic sessions in the Rockford area, allowing our patients to see specialists right here in Rockford.”
SwedishAmerican announced a plan earlier this year to invest $130 million to construct a new women’s and children’s tower and make significant additional renovations to its Midtown Rockford campus. Plans for this new tower include a Level III Neonatal Intensive Care Unit, featuring 10 additional beds, and 24-hour care from a multidisciplinary team of physicians from both SwedishAmerican and the University of Wisconsin’s American Family Children’s Hospital.
Additional highly trained neonatal nurse practitioners, experienced RNs, pharmacists and other specialists will staff the unit, Polizzotto adds.
“This will allow the more than 2,500 babies born here every year to receive an even higher level of care,” Polizzotto says. “The expansion of maternal, neonatal and pediatric services at SwedishAmerican means that central Rockford residents will have ‘neighborhood access’ to the highest level of neonatal and pediatric care.”
In addition, although not specifically located in the women and children’s center, SwedishAmerican’s construction and development plans include adding mental health beds for children under the age of 12.
“This is an in-demand service that has not been available in Rockford for many years,” Polizzotto says.
Until four years ago, Polizzotto delivered babies at SwedishAmerican. But, as a family physician, the care he provided was mainly to relatively healthy moms and babies.
“I had, and continue to have, great respect for the skilled and compassionate Labor and Delivery, Mother/Baby and Special Care Nursery nurses with whom I partnered to care for these patients,” Polizzotto says. “Every birth is a miracle.”