The Pediatric NeuroRehabilitation program at Milestones is celebrating 25 years of service. Mary Foy shares how her son Daniel has faced numerous challenges in his life, but thanks to his time at Milestones, he’s preparing to attend college next year.
Many parents talk about the whirlwind of emotion surrounding the day of their first baby’s birth and our story was no exception. Within hours of experiencing the joy and excitement of finally meeting our firstborn, blue-eyed baby boy Dan, I learned he had a serious heart condition that could kill him.
Dan had what’s called hypoplastic left heart syndrome, a rare congenital heart defect that occurs when parts of the left side of the heart don’t completely develop. At four days old, instead of coming home, he was undergoing his first open-heart surgery at University of Michigan’s C.S. Mott Children’s Hospital.
An uphill battle from birth
It was just the beginning of a long journey that included two more open heart surgeries by the time he was 18 months old, hospice at age 2 and a heart transplant and stroke before high school graduation. Each time we didn’t know what would be next. Each time, he fought harder.
At age one-and-a-half he was a thriving baby boy full of energy, curiosity and joy – but then he had his third and final open heart surgery. There were several complications, the most devastating of which was a very rare and complex lung condition called plastic bronchitis, which formed life-threatening plugs in Dan’s lungs that could choke him. We fully expected him to die as there was no known cure for the disease and it was severely attacking his lungs. Dan was placed in hospice just after he turned 2.
But somehow our little toddler fought his way back to health. Miraculously, within a month, his plastic bronchitis subsided greatly and finally went away, and we hoped it was gone for good. Except for not being able to play competitive sports, he went on to do everything a “normal” kid would do. He excelled at school. We took family trips. He was healthy.
Then, just before starting high school at age 13, his plastic bronchitis returned with a vengeance. By then, there were some new medications to treat it but still no known cure besides a heart transplant. After much thought and deliberation, Dan, along with my husband Dave and I, decided that a heart transplant would be the best option to give him the quality of life he so deserved. Dan was placed on the heart transplant list in 2012 and his new heart arrived just before his senior year on July 22, 2013. He finished his junior year with a 4.0 GPA despite being chronically ill and enduring frequent hospitalizations.
Complications no one could have predicted
The transplant surgery was extraordinarily difficult, due to severe scar tissue that no one could have foreseen. During these complications, Dan had to be immediately placed on bypass and unfortunately, suffered a massive right-sided stroke, causing him to be initially paralyzed on the left side. He could not move, walk, speak, eat, or swallow. We were devastated. The primary reason that we opted for the heart transplant — improving his quality of life — seemed to be further off than ever. But as Daniel has done his whole life, he fought, and this time found himself in the biggest fight of his life. After three weeks in the ICU at U-M’s C.S. Mott Children’s Hospital, Dan was transferred to the regular floor and started his inpatient therapy. Initially, he had to be hoisted in a sling from his hospital bed to a wheelchair that strapped him in and completely supported him.
Seven weeks later, Dan walked out of the hospital without any supportive devices – another miracle. His feeding tube was also removed and he started eating on his own. We immediately transitioned him to outpatient therapy. After briefly attending a different program at a nearby children’s hospital, we decided to contact the Pediatric NeuroRehabilitation program at Milestones. This was the best move we could have made and exactly the place that Dan needed to be.
Road to recovery
During his eight months at Milestones, Dan received physical, occupational, speech, education, recreational and psychological therapies. We loved how our physical therapist, Kendra, would always incorporate some sort of sports trivia game into whatever activity Dan was doing. Dan is a sports lover, and this helped stimulate his brain as well. During occupational therapy, he worked with Anne Chadwick particularly on his left hand, which became significantly impaired from the stroke. While he hasn’t gained full strength back in his hand, Dan has made incredible strides, and learned to enjoy activities such as Anne’s yoga class that she held for a group of her patients.
During speech language therapy, Ann Comstock worked with Dan on speaking and swallowing. She worked with Dan’s teachers to get the syllabus of his British Literature class, and had him read each book listed, including Beowulf and Hamlet. It was incredible to see Dan regain his confidence in school subjects, and he also received help in other subjects such as math during education therapy with Eileen Latini, a certified school teacher. He was also able to attend group therapy sessions in the summer, including programs such as as photography and video journaling led by therapists from art therapy, occupational therapy, rehabilitation psychology, and therapeutic recreation.
Daniel’s stroke has been a life-changing event for all of us. While some of life has returned to “normal,” we are still on a journey. We have all learned that we can choose to be stuck in the past and focus on negativity, or be thankful for each day and focus on the positive. We’re all very thankful that we have Daniel. He remains in individual psychotherapy and this is helping him very much. It’s really so incredible the recovery he has made in the last 16 months, He just completed all of his college applications and is waiting to hear from six colleges. He plans to fulfill his life-long goal of going away to school and pursue his dreams. What else can we say but God is good!
Take the next step:
- Learn more about the Pediatric NeuroRehabilitation program and services at Milestones.
- Visit the Physical Medicine and Rehabiliation website for more information about U-M rehab services.
- Read more about both the Pediatric Neurorehab and MedRehab programs and contributions over this quarter century.
- Read other Milestones anniversary blog posts: David’s story and Gabe’s story
University of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.