Meet Amour: 2020 Family Advocacy Week Champion

Amour is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Amour and his family will share information about his health journey, Children’s Hospital of Michigan’s role in providing Amour with necessary health care services, and why the public and our elected officials must invest in the future of kids like Amour.

When Amour was 6 months old, his parents noticed his head growing larger in size. This symptom, along with other developmental milestones he was missing, was cause for concern.

“I shared my concerns with our pediatrician,” says Mieasha, Amour’s mother. “I told her I was worried Amour might have hydrocephalus. Instead of dismissing my concerns, she ordered an ultrasound.”

The ultrasound confirmed the family’s worries and revealed that Amour was born with an arteriovenous malformation called Vein of Galen Malformation (VOGM), a rare blood vessel abnormality inside the brain which caused the hydrocephalus.

Dr. Sood scheduled an emergency surgery to place a shunt to relieve the pressure, then an array of testing and therapies began. Amour underwent a sleep study test, EEG testing for seizures and development therapy as well as several other visits with a cardiologist and neurologist.

“Our family was scared, but our faith was strong,” says Mieasha. “Emotionally, we tried to keep our spirits high and focus on a positive outcome.”

However, at 2 years old, Amour started to have seizures. His seizures would mirror a stroke, leaving his left side weak for short periods of time. One seizure-induced sleep for 64 hours.

At 4, his VOGM developed a large aneurysm in the brain stem and needed multiple surgeries. At one point, the doctors were not sure he would make it through another surgery and recommended planning for hospice care.

“Amour was unable to speak, on a breathing machine, and having seizure-like activity,” says Mieasha. “He was fighting for his life to be here with us and we knew we had to be strong for him. We decided to go ahead with the 8-hour surgery to remove the aneurysm from the brain stem.”

After more than five weeks in the ICU and 12 weeks in inpatient rehab, Amour was discharged in July 2020.

Today, Amour is 5 and improving more and more each day. He’s also on seizure medications that help manage the attacks. He is slowly getting back to his old self, making jokes, eating throughout the day, and attempting to walk.

“Without Children’s Hospital of Michigan, I don’t know where we would have taken Amour for his care,” says Mieasha. “Amour's case was special, it’s not something that doctors normally see in children. It really takes special doctors and nurses to care for kids with special conditions like Amour’s.”

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