Beating the odds and growing strong

GENEVA — Morgan Kowalski was worried recently that her son might not be ready for kindergarten come September. She thought maybe he should do another year at Happiness House before he took on the challenges of West Street School.

“They told me that he was already reading and that he’s doing second-grade math,” Kowalski said. “They said they had nothing more to teach him. And I met with (West Street) and they are ready for him.”

Not bad for a child who was born at 25 weeks gestation and weighed a little over one pound. Doctors warned that he had only a 50% chance of survival and, even if he lived, he would likely have cerebral palsy and be blind and deaf.

As he celebrates his fifth birthday today, Thomas “Tommy” Kowalski is none of those things. He is a happy, gregarious, inquisitive and otherwise normal-appearing little boy who enjoys playing with his younger brother. Tommy has a fascination with mechanical things, including the automatic garage door at his house on Brian Drive.

“Look at it open, and now closed,” Tommy exclaims as he pushes the button a few times and door goes up and down. Then he wonders where his little brother, Danny, has gone off to.

“He’s inside,” Morgan, 30, tells him as they trot into the house. “We’re going inside too, to get our bathing suits on. We’re going to the spray park.”

There was a time, Morgan admits now, that neither she nor her husband, Jeff, was sure that this little boy would ever be able to walk, let alone frolic through geysers of water.

Tommy does have small developmental delays, but some recent exams for eye issues and hearing are “so far, so good,” Morgan said. And, he’s off the criteria for cerebral palsy.

Not only has Tommy made significant physical progress, Morgan has excelled in major ways as well.

From not knowing a thing about premature babies until the day she had one, she educated herself to the point that she is now part of a program at Stanford University in California. She works remotely with neonatal intensive care units in hospitals all over the world, helping them meet the needs of the babies they treat, and their families.

How will this baby live?

Thomas Kowalski was born June 10, 2018, weighing 1 pound, 11 ounces. He was 12½ inches long, a little bigger than a standard ruler. He was supposed to be a twin, but at about eight weeks, Morgan said she lost the other baby. She had felt some pain on and off during her pregnancy, and she sought medical treatment the day of his birth because she said the pain had become intense.

She said she went to the emergency room at F.F. Thompson Hospital in Canandaigua, where she was examined and the doctor told her she was five centimeters dilated.

“They said, ‘You’re having a baby today,’ “ Morgan recalled.

She was rushed by ambulance, complete with lights and sirens, to Strong Memorial Hospital in Rochester — so fast that she left her shoes at Thompson.

Morgan said she and her husband were unprepared; although they knew they were having a boy, they had not even picked out a name. She decided on Thomas while riding in the ambulance and discussing it with the emergency medical technician who was caring for her.

A short 3½ hours after the pains that sent her to the emergency room started, Thomas made his entrance. First, there was the marvel that he survived the birth. Then came the extraordinary interventions to keep him alive.

“I put my hand on his head, and they said to me, ‘Say hello and say goodbye,’ and they wheeled him away to the NICU,” Morgan said. “I thought, how is this baby going to live?”

His eyes were fused shut. His paper-thin skin was still covered with lanugo, the soft, fine hair covering a fetus to keep it warm while it grows inside the uterus.

In Strong’s neonatal intensive care unit, Tommy the Tiger, as he was fondly nicknamed by providers, overcame a laundry list of issues that included cellulitis of the abdominal wall, nine weeks on a ventilator, two unplanned extubations, premature atrial contractions, systemic hypertension, severe growth failure, a significant tongue tie, reflux, and Stage 3 retinopathy of prematurity, which is an eye disease.

At 2 pounds, he had heart surgery to close an open valve. Doctors told Morgan his son’s heart was about the size of an almond.

She stayed with Tommy every day, from 7 a.m. until 7 p.m. Jeff, a real estate attorney who owns Kowalski Legal in Geneva, would come up to spend the night with him, so there was always a parent present.

Coming home

In the Kowalskis’ garage, a banner stills hangs that friends and neighbors put up to welcome Tommy when he finally came home 117 days, nearly 17 weeks after he was born.

“He needed to be able to breathe on his own, without oxygen,” Morgan said about the milestones he had to hit. “He had to be able to sit in a car seat. He had a feeding tube, and he had that until he was 5 months old. He had to have a steady heart rate.”

He still had periods several times a day where he would stop breathing and his parents would have to do what Morgan described as “mini-CPR.” She also had to administer diuretics to keep fluid off her tiny baby’s lungs.

“His meds list was pretty long,” Morgan said. “We had nursing staff come in to help.”

Because of his really low birth weight,Tommy is classified as a disabled child, making him eligible for many kinds of medical and other services without having to incur big bills. He is on Medicaid, which covers the cost of most of what he needs. It’s a good thing, his mother says, because his hospital bills alone easily topped $3 million.

At Happiness House, he has occupational, speech and physical therapy. He also does music therapy and studies Taekwondo and soccer.

“He works so hard,” she said. “He’s always practicing center splits. He’s always trying to be good at things.”

Morgan’s metamorphosis

One of the hardest things, besides the physical work of taking care of a child with so many challenges, was that Morgan felt that there was no one who really could identify with what she was going through. It was hard for her to hear other new mothers complain about things like babies waking up in the middle of the night or getting into things. She found herself wishing those were her problems.

Morgan realized that she would have to be her own support. She watched closely at the kind of care Tommy was getting in the hospital. She spoke up and asked a lot of questions. She quickly educated herself about preemies and became a huge advocate not only for Tommy, but for other families with babies in the NICU.

Much at her insistence, Strong created a part-time position in the unit for someone who just deals with parents of preemies and keeps up with what is needed. And, since 2020, Morgan has volunteered herself in the unit, to help others to navigate the often confusing and scary world of having a baby with severe challenges. It’s a formal arrangement, one she studied for while caring for Tommy and his brother, Danny, who has none of the challenges that Tommy faces.

“I serve in our hospital’s Family Connection Program, as a parent mentor through our NICU Family Support program, and as our NICU’s Vermont Oxford Network Family Partner,” she said. “After completing the Engage Grow Thrive Small Baby Care Specialist Program alongside providers, I’ve been working with leadership on quality improvement projects and participating in our Family Centered Care task force to offer the parent perspective on important initiatives across the unit.”

She said her family “received extraordinary care at Golisano Children’s Hospital, and their desire to improve the patient and family experience is a testament to their excellence.”

There’s more. Earlier this spring, Morgan posted on her LinkedIn page that she was “thrilled to be starting a new position as program manager of the Family-Centered Care Taskforce at Stanford Health Care! Check out our initiatives for improving family-integrated care in NICUs across the U.S. and globally at https://lnkd.in/gPv7EiGi.”

She wants to make sure that the relationship between NICUs and parents is as strong as possible, she said.

“It’s been clinically proven that NICUs who have a family-centered model of care have better infant outcomes and lower mortality rates,” she said, noting that she’s already been in contact with hospitals around the world through her job at Stanford.

What’s next

Tommy looks healthy, but Morgan said he still struggles with acute kidney injury, hypocalcemia, bronchopulmonary dysplasia, asthma, slow weight gain, and a multitude of developmental delays. He didn’t walk until he was 2 years old.

She’s sure that there will be more challenges for Tommy, but she’s prepared for them and optimistic he will have good experience in kindergarten.

“Health complications aside, Tommy has the biggest, brightest personality and makes us laugh every day,” she said as she watched him cuddle and show off his stuffed Tigger, which he’s had since he was born, when he was more or less that same size.