Saving Mia’s ‘big heart’

How ‘Save A Heart’ helped a family of 6 during an unexpected 333-day hospital stay to treat baby’s congenital heart disease

(From back to front) Bobby; Mia, 4; Anna May, 7; Ella, 6; and Nina, 19. The family lived in a room at the Ronald McDonald House for 300 days during Mia's treatment at Mott.

(From back to front) Bobby; Mia, 4; Anna May, 7; Ella, 6; Wendy and Nina, 19. The family lived in a room at the Ronald McDonald House for 300 days during Mia’s treatment at Mott.

At seven days old, Mia Wilson was airlifted to Ann Arbor for what doctors said was her last hope in fighting a serious heart condition.

Mia’s parents Wendy and Bobby, along with their three other daughters then ages 17 months, three and 14, also made the 196-mile trek from their home in Akron, Ohio to University of Michigan’s C.S. Mott Children’s Hospital, a world leader in congenital heart disease.

“We packed for three days,” Wendy recalls. “Never in a million years did we think we’d be here for four seasons.”

333 days

Mia, who had two open heart surgeries before she was five months old, stayed at Mott for 333 days – nearly her entire first year of life. Wendy says the Wilsons relied on the support of many, especially Save A Heart – which provides financial relief to families receiving care at Mott’s Congenital Heart Center.  Wendy will share her family’s story at Saturday’s annual Save A Heart fundraiser.

“No one ever imagines unexpectedly ‘moving’ their family on the spot to fight for one of their children’s lives,” Wendy says. “There are so many things you wouldn’t ever think about until something like this happens. ‘Save A Heart’ helped with those seemingly little but important things to get us over the hump during a year when we basically traveled between the room we were sleeping in and Mia’s hospital room.”

Save A Heart provided gas cards to help the Wilsons meet family halfway home at the Ohio Turnpike so eldest daughter Nina could get to events for her international choir group. There were also meal cards to help cover regular meals at the hospital. The group even paid for a catered picnic in the hospital courtyard attended by a care provider so that the family could take Mia outside for the first time.

“You are so focused on your sick child but you have three others who need you. Save A Heart helped us care for our other kids and helped our family find some normalcy,” Wendy says.

Save A Heart has provided financial assistance to more than 3,000 families like the Wilsons for expenses not covered during hospital visits, including travel and lodging, gas, meals and hotel stays for extended family members. The organization also funds medical research, including genetic testing, and a child life specialist to help prepare patients for procedures through medical play, therapy and education. Money raised also funds biannual patient reunion “We got the Beat.”

The Wilsons, whose children were homeschooled, didn’t return home to Akron the entire 11-and-a-half months until the day Mia was discharged. Wendy ultimately had to leave her job as a health care compliance officer and Bobby sold half of his business in order to stay in Ann Arbor.

SaveHeartInfo.fw“We are an international referral center for children with complex heart disease and families travel from around the world for life-saving treatments here,” says Stefanie Peters, administrator for Mott’s Congenital Heart Center.

“The Congenital Heart Center at C.S. Mott Children’s Hospital often becomes a second home, and Save A Heart helps support the needs of the entire family.”

The journey

Wendy was 30 weeks pregnant with Mia in 2011 when an ultrasound showed signs something was wrong. She was referred to a pediatric heart specialist within 24 hours who delivered the devastating diagnosis. Mia had Ebstein’s Anomaly, an abnormality of one of the valves in Mia’s heart, which causes it to leak severely and  prevents blood from flowing to lungs to get oxygen. The prognosis was grim.

At birth, Mia wasn’t breathing. She arrested several times. Her condition was so severe, other nearby hospitals couldn’t take her case. Not knowing how long they would have with Mia, the Wilsons had arranged family photos at the hospital, a bedside visit with a pastor and were meeting with palliative care teams in Akron.

“Mott gave us hope where there was little left,” says Wendy, teary-eyed. “Still, we were walking a fine line between reality and hope.”

Mia had an uphill battle, also suffering from multiple strokes, bouts with severe low blood sugar, a heart infection and multiple stomach and bowel problems. Today, the chatty, blue-eyed 4-year- old, who loves swimming, boating, Play-Doh and people, continues to receive care at Mott.

Wendy credits others for helping the family, too. Mia’s siblings found reprieve through the sibling program and activities through Mott’s Child and Family Life. The family also stayed at the Ronald McDonald House during Mia’s treatments.

The day of discharge, the Wilsons did a “victory lap” around the hospital that had become their home for a year and finally packed Mia up to go home.

“We still have a long journey ahead but we are grateful for all the support we received that helped us get this far,” Wendy says. “We just want to do what others did for us and give back.”

Take the next step:

Learn more about Save A Heart and how you can help.
Learn more about Saturday’s Save A Heart event.
Learn more about the Congenital Heart Center at C.S. Mott Children’s Hospital.

mott blog - logo thumbUniversity 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.