Michael is a 13-year-old boy who lives with his mother, father and little sister. Mom and Dad could not wait for Michael to be born. When Michael arrived, his parents learned he had amniotic band syndrome.
For Michael, the bands that cut off his blood supply in utero caused his fingers and legs to entangle and lose blood flow. He was born with webbed fingers and toes. In addition a defect in his leg affects the blood supply to his leg. The imprints on his legs where the bands were entangled are still visible.
As the first-born child, his parents were naturally frightened as to what his condition would mean for his life. He had two surgeries as a toddler to separate his fingers and toes. He wore casts on his hands and feet for several months following each surgery. Therefore, most of his parent’s memories of him as a child include his casts.
The surgeries repaired his blood flow. However, his fingers are different lengths. His left hand also still has defects that can make simple everyday tasks more difficult.
It’s Not Always the Physical Challenges That Are Hardest
As Michael progressed through school, the other children in his class teased and made fun him. Some cruelly referred to him as “no hands Michael.” Mom’s heart broke over the ridicule he endured simply because of his appearance and other children’s’ fear of what they do not understand.
Now that he is older, Michael knows how to talk to his peers about his condition and deflect any negativity that comes his way. But he’s not bitter about what he has gone through. Instead, he uses his condition to empathize with other children with disabilities and goes out of his way to be nice to others.
Through the help of his Lift a Child to Health Care Coordinator at CDTC, he is working with a counselor. He now has the tools to process his feelings of grief and anger. He is a wonderful student and doing very well all around. His Mom describes him as smart and helpful. She knows that he has a very bright future ahead of him.
Michael’s Journey Prepared Them For The Next
Because of what the family has gone through with Michael, they were better prepared when his sister was born five years ago with a heart murmur. Nevertheless, they have had to learn a lot in regards to her treatment. She shares the same LCH Care Coordinator who helps the family to address her health needs. The family would be lost without their CDTC doctors and the guidance and support they receive from their Care Coordinator.
Michael and his family’s story is inspiring because they have come out of a disheartening situation with such positivity and regard for everyone they encounter.