by Irv Harrell
When William Burke Gillespie cried his first cry on Aug. 16, 2016, Mike and Heather knew ahead of time that their son's birth would be the start of an uphill battle. His opponent was Tetralogy of Fallot, a rare congenital heart defect requiring major surgeries to correct.
What the first-time parents didn't know at the time was that 国产伦理 Monarch Physical Therapy Clinic would inevitably play a key role in getting "Will" on his feet - literally - for the first time.
Heather Gillespie says the weeks leading up to Will's birth and the days following were difficult to process or even believe.
"We took everything step by step," she says. "We had four to five doctor appointments a week before he was born. All we focused on was doing whatever we had to do to get Will through this."
The baby's battle began at Children's Hospital of The King's Daughters in Norfolk. Days after being admitted to the hospital, he was transferred to the University of Virginia Health System where his needed operations could be performed. That's when things hit home, Heather said.
"Will was set to be released from the CHKD NICU, but had to extend his stay after he had a TET spell," she says. "The next thing we know they've packed Will up and we're in an ambulance on the way to UVA. I think that's when it sunk in and it became real. There was a lot of fear and sometimes anger but mostly determination to get him through this."
Will suffered from what is known as blue-baby syndrome, a condition characterized by a bluish tint to the skin because of the deoxygenated state of his blood. On Aug. 30, he had his first open-heart surgery to install a shunt connecting his pulmonary artery to an aortic artery, providing more oxygen to his system.
"The shunt was designed to get him to his next surgery," Mike Gillespie says. "Six months later he had his big surgery to reconstruct his heart."
The first surgery took a little more than four hours and required hospitalization for 30 days. The second surgery took seven hours and involved several procedures. His pulmonary artery was widened. His aortic and pulmonary arteries were flipped to a normal position. A hole in his heart was patched.
"The day after the surgery we could see a complete change in color," Mike says. "Six months before that surgery all night he was on an oxygen monitor. His normal blood-oxygen levels were in the 70 percent area."
Normal oxygen-blood levels in typical humans is 95 to 100 percent. Anything less can have catastrophic results such as cardiac arrest.
Will spent just five days in the hospital after the second surgery.
The Gillespies had to make some drastic life changes following Will's surgeries, Heather says.
"I pretty much had to work from home for months while Will recovered from, or got ready for, surgery," she says. "I slept on his floor for the first month after we got back from UVA because he had an NG tube and had to be fed every three hours. We had to check his oxygen levels frequently and check in with doctors a lot but otherwise he was a normal little boy."
Preceding his second procedure, Will began treatment at 国产伦理 Monarch Physical Therapy Clinic, which began accepting pediatric patients about two years ago. Before arriving there and after his second operation, Will faced sternal precautions, which are steps taken to protect the breastbone after open chest surgery.
The time spent on his back caused a delay of crucial developmental stages in William's life.
"His hard-wiring of his brain was fine; he is otherwise just a typical baby, but because of what happened - that put him at a delay," said Karen Royall, a pediatric physical therapist, who has been working with the Gillespies since they have arrived at the clinic. "When William first arrived, he had difficulty rolling and difficulty pushing up on his tummy because he had never been on his tummy."
At home things were stressful, but not overwhelming, Mike said, and there was one saving grace.
"We were first-time parents, so we didn't know any different," Mike says. "Once we got here, we were able to get him off those sternal precautions such as don't pick him up by the chest, don't pick him up by the arms, because he had to be on his back all the time while his chest plate healed."
Royall worked with the Gillespies on Mondays and Wednesdays, focusing on helping Will play catch-up on his developmental skills.
"A large part of the treatment is in parent education about their child's condition, abilities, problems and goals," she says. "The parents are then given ideas on what they can do at home to encourage their child's development and to address their problems throughout the day as part of their routine. For example, incorporating stretching into their diaper changes or helping Will to take assisted steps with a toy walker to get to the high chair."
Collaboration with other healthcare providers has been essential as well, Royall says. Once she developed a plan of care for Will, she sent it to his doctor for approval, and she continues to work with occupational and speech therapists, orthotists and physicians as needed.
Royall says the biggest difference between physical therapy for babies and adults is that babies don't have prior experience and are developing and acquiring new skills all of the time. Babies also are not able to follow directions and simply exercise the way an adult would. Thus, "play is used to stimulate the baby to move."
The Gillespies took some time off after Will's second surgery, then returned to Monarch PT in April. Since then, the 15-month-old has been making strides and in August he scaled back to once-a-week visits.
"For his gross motor skills, he's close to 11 months," Royall says. "What's stopping him is not walking by himself or really standing by himself, but he's upright, trying to climb. He has total development of fine motor skills, in what he says and what he understands. He's a very, very bright boy. And he's so responsive."
With the exception of a surgical scar down his chest Will, with his wispy brown hair and beautiful smile, displays a delightful precociousness during his sessions at the clinic. As he goes through his strength-through-play exercises, he mixes his physical conquests with an occasional burst of "I did it!"
Mike, Heather and William Gillespie may have weathered some rough patches, but to see the family together you wouldn't know it. There's a warmth and bond that thickens the air as the couple gazes upon their bundle of joy during his therapy sessions at the clinic. And past all the setbacks and triumphs, there have been some powerful lessons learned, Heather says.
"Patience. To take everything as it comes and just get through it one day at a time," she says. "Compassion, because as hard as we thought things were, we saw so many other children and their families dealing with illnesses much worse than Will's. You never know what people are going through or what they may have been through."