Never Say Never!


Standing in the middle of his Lowell high school football team’s huddle, quarterback Robert “Ziggy” Burns had two thoughts running through his mind. The first, and most obvious, was to score a touchdown. The second thought was of his doctor, who had told him six years earlier that he’d never walk again after a polio diagnosis left him paralyzed.

 

“I showed you” ran through Burns’ mind as he gripped the ball. The leg braces and crutches that had supported him during his freshman year are gone, replaced with a varsity lett er on a state championship team.

 

Memories of lying in an iron lung at Boston Children’s Hospital are still etched in Burns’ mind. His story began in 1952 and the polio epidemic was sweeping the nation, and while parents did their best to protect their children, the relative obscurity of the disease with too many unknowns left many scrambling, including the doctors and hospitals treating the victims. Doctors had told Burns’ parents he’d never walk again, but he had other plans.

 

From his initial diagnosis to the years of grueling therapy that followed, the March of Dimes played an integral role in Burns’ recovery. “All that time I was in the hospital, and all that time I went through rehabilitation, my parents never ever got a bill,” he says. “They used to send a physical therapist to my home and they taught my mother how to do a lot of the exercises so I could build up the stronger muscles. I would visit different locations where all these polio kids would go and they’d try to teach us how to walk up stairs. It was a tough time. I think to this day, one of my biggest motivations was that I just wanted to play football so bad. High school football was huge. I lived for the day that I could run like a deer, that I could tackle anyone.”

 

Without support from the March of Dimes, Burns’ dreams would’ve stayed dreams, and he’s since dedicated a big part of his life to helping the organization that put him back on the field. “I keep a saying right here on my desk that I always look at, and it says ‘From Polio to Prematurity,’ and how we’ve defeated infantile paralysis, and now the goal is to try to prevent preterm births and birth defects. That’s why I’m so involved,” he says. “I just have a love for kids who have special needs through no fault of their own. And I think if we can raise money and reduce the number of preterm births, we’ll be far better off.”

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Christine Sweeney, a former professional figure skater whose husband Don played hockey for the Bruins and is currently their assistant general manager, agrees. Their sons, Jarrod and Tyler, were delivered via emergency C-section at 25 weeks. It was a precarious pregnancy that had Sweeney on bed rest at 18 weeks while her husband was in the playoffs. At 22 weeks, she was admitted to the hospital with contractions, and while the doctors were able to stop them, she and her husband had to decide at what point they would fight for their babies. “We went through the statistics with the doctors … and chose 25 weeks, because at that time, 14 years ago, at 25 weeks they had an 80 percent chance of survival,” she explains. “They would definitely have some issues, but they would have a very good survival rate.”

 

Every day that the babies stayed in Sweeney’s womb was crucial, and as she reached the first day of her 25th week, her contractions started again. “I waited until Don finished his playoff game since the doctors told me I could. He had scored a goal that night and they were going to interview him, and I just said get him on the phone ’cause he has to get here fast,” she recalls. “They got him here with a police escort, and the doctor held off until after midnight that night because it was exactly 25 weeks. They were a pound six and a pound six and a half. … And when the babies came out they cried, and I didn’t think they would cry. And that was just so exciting.”

 

Jarrod and Tyler were introduced to the world on April 29, 1999, whisked away by teams of medical personnel who would work around the clock to give them the best chances of survival.

 

Hours passed, then days, and while the boys underwent surgeries to address different issues – Jarrod had a duct above his heart fixed while Tyler had a double hernia repaired – they grew stronger. “It’s amazing how strong you become when you’re put in a situation. You just deal with it. I think I have more trauma now years later when I look back on how scary it was,” Sweeney says.

 

After three months in the hospital, Tyler was finally able to come home on July 27. The next day, Sweeney excitedly bundled up her son and took him to an eye appointment. She thought it would be a routine eye exam, as they had done throughout the boys’ stay in the NICU. Preemies are at risk for retinopathy, when the blood vessels pull on the eye causing retinal detachment and blindness. “Tyler had a minor hemorrhage in his eye because he had been

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crying so they missed the detachment of the retina,” Sweeney says, sadness in her voice. And then she recalls the doctor’s words as he looked into her son’s eyes, “‘I’m sorry, I can’t help you, he’s already blind. You’re going to have to go to the specialist and they’re going to have to tell you what to do.’ And that was the first day that I cried because we had gone through months of being in the hospital never missing a day. It was devastating.”

 

Tyler was scheduled the next morning for surgery to try and correct the detached retina. Later, he’d have four more unsuccessful surgeries in total before the age of 2. Meanwhile, Jarrod had preventative laser eye surgery in the hospital and came home a few weeks later – the first time the Sweeney family was all united under one roof.

 

Today, despite the learning differences that both boys struggle with, the two almost 15-year-olds have come a long way from their NICU beginnings. “They have grown a ton this year; they are both taller than I am," Sweeney says´╗┐. "I think they understand now they had a rougher go in the beginning, and I think they know that was hard for them, but they are fighters because of it. I think that’s probably why I introduced the March of Dimes to them, because I wanted them to know where they came from. I think when you know where you’ve come from, and you know how hard you had to fight, it builds your character and makes you who you are. They are pretty resilient guys. And if they fought that hard when they were little they have a lot of potential.”

 

The March of Dimes has worked diligently to research prenatal care and have funded countless projects to help preemies, like Jarrod and Tyler, thrive, including helping to fund research on surfactant, a foamy substance that lines the lungs in babies, making breathing easier to help prevent respiratory distress syndrome in preemies.

 

“When we were in the NICU, the babies had their own isolettes, but if they had to work on the babies, they had to move them to another bed to work on them,” Sweeney reminisces. “We toured the NICU a few years ago, and now they have isolettes they can open, and they can care for the baby, and they can close it up so they never have to move the baby because the stress on the baby when they are that small – it can be almost fatal. The March of Dimes has made sure that babies are surviving. And I think the key piece that I wasn’t aware of is the educational piece that they do provide for people. They have support groups especially for moms of preemies; they have a lot of different services that people don’t always know they can tap into.”

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“And that’s this new generation,” Sweeney continues. “There are so many more kids who we saved and they need a little extra help, and they may be learning a little differently. And it’s why the education with March of Dimes is important because yes, we’re saving them and yes, we have all this great technology, but we also have to educate on the other end so we can have as many healthy babies as we can.”

 

 

Th e March of Dimes Today

 

Adam Wolfberg, M.D., is an obstetrician specializing in high-risk pregnancies, and author of the book Fragile Beginnings (Beacon Press, 2012). He and his wife, Kelly, are parents to three girls, Hannah, Grace and Larissa. Larissa was born at 26 weeks gestational age. Today, he works side by side with the March of Dimes to help further their medical advancements for prenatal care and preemies.

 

What projects are you currently working on with the March of Dimes?

I have worked on initiatives to educate obstetric providers about the risks of late-preterm delivery (35 to 39 weeks gestational age), use of progesterone for women with a short cervix or a history of preterm delivery, and other initiatives, but my primary concern is that the March of Dimes remain in a position to support research at Boston’s remarkable research institutions that help us gain a better understanding of the causes of prematurity, and then develop treatments that prevent early delivery.

 

What research or studies do you hope to work on in the future?

My colleague Michael House, at Tufts Medical Center, is working on innovative research that would strengthen the cervix in the case of women who have cervical insufficiency. ... My own experience with prematurity leads me to work shoulder-to-shoulder with the March of Dimes to support research, such as Michael’s, which will make a difference for women in years to come.

 

Recently, the March of Dimes has contributed to the first reduction in the rate of premature delivery in decades by supporting research into, and then advocating for, the use of progesterone, and the firm adherence to protocols that prevent elective deliveries before 39 weeks. Future initiatives into understanding the biology of preterm labor, the structure of the cervix, and therapies in the newborn intensive care unit are in the early stages and will bring exciting advancements in years to come.

 

How has the March of Dimes helped your patients?

The March of Dimes has supported the presence of parents’ support personnel in newborn intensive care units around Boston. These are people who provide education, counseling, and support to moms and dads at the time when they need it most.

 

 

Cheryl Crosby is senior editor of Boston Parents Paper.

 

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16 May 2014


By Cheryl Crosby
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