Going the Distance to Save Amelia’s Life

November 15, 2017 6:00 AM

Long-distance trips to treat their daughter’s congenital heart defect stretched the Lahti family — until Save A Heart stepped in.

When asked which word best describes her 15-month-old daughter, Amelia, Amy Lahti says without hesitation: happy.

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“It has to be happy. People always comment on her big smile and her sweet attitude. They ask if there is ever a time she isn’t happy.”

Because of the congenital heart condition hypoplastic left heart syndrome, Amelia has already had three open-heart surgeries at University of Michigan C.S. Mott Children’s Hospital — the first when she was just 4 days old.

Throughout these trying times, Amelia has always maintained her happy attitude and faced the world with a smile.

Caring for Amelia’s tiny heart

Pregnant for the first time in 2015, Amy eagerly anticipated bringing a baby into her family. Her husband, Bob, had been diagnosed with a heart defect as a child, so the couple knew there was a chance their baby could face similar complications.

At a routine 20-week ultrasound at a local hospital, they were told something was wrong with the left side of their daughter’s heart. The diagnosis meant Amy and her baby would require care from a specialized cardiovascular team. Her baby would need at least three open-heart surgeries to live, and this condition had no cure.

“It was hard for me to imagine any baby having to undergo such a complicated set of operations, let alone my baby,” she says. “I couldn’t help but feel scared about her future.”

Amy knew from day one that she wanted this care to come from the Mott congenital heart team, a top-ranked international referral center for children with complex heart disease.

The only catch? The hospital was a four-hour drive from their home in Boyne City, Michigan.

This meant the couple made regular day trips to Ann Arbor throughout Amy’s pregnancy. As her due date approached, she even moved into a local hotel as she anticipated Amelia’s arrival.

“I knew I wanted to be at Mott from the very beginning,” she says. “I wanted to be near the team that was most prepared to care for Amelia and her tiny heart.”

Amy says as she grew to know the Mott congenital heart team, fear turned into confidence.

“Everyone was so caring and took the time to explain things as many times as we needed them to. I started to see that it was going to be hard, but it wasn’t going to be impossible. I felt calm and prepared.”

Easing the burden

The long treks to Mott continued to be a regular part of the Lahti family’s life after Amelia’s birth. Her first two surgeries kept the family in the hospital and away from home for the first three months of her life. Bob was still working and traveled back and forth to see his baby on the weekends. Additional complications and routine procedures between the second and third surgeries forced them to make frequent trips back and forth.

SEE ALSO: Tiny Heart Repaired While Baby Still in the Womb

The travel put a strain on the family, who were relying on one income. They weren’t the type to ask for help, which meant at times they wondered how they were going to afford the gas to get home.

It was then that the Mott congenital heart social work team, which had also helped the couple coordinate coverage with their insurance company, gifted them with gas cards through Save A Heart. Save A Heart raises money to provide much-needed financial relief and support to patients and families.

Not having to worry about finances meant Amy could continue giving her daughter her full attention during recovery. She will share how Save A Heart helped her family as the guest speaker at this year’s annual fundraising event Nov. 18.

“It’s hard to put into words how much that meant to me at the time,” she says. “To some it may seem insignificant, but it saved a piece of our sanity.”

Supporting families in their time of need

In 1992, a group of U-M physicians and caregivers recognized the burdens of patients and families who were facing life-threatening pediatric heart conditions. Together, they sought to provide financial relief — like the gas cards gifted to the Lahtis — to help support families during challenging times.

On top of travel and lodging expenses, Save A Heart also funds medical research and sponsorships to send heart patients to summer camp and hosts an annual reunion, which honors and remembers patients with congenital heart defects.

The group relies on private donations to provide these critical services.

Thriving today

Amelia is now a vivacious 16-month-old who loves to read and play with her cousins and friends. If not for the scar on her chest — called a “zipper” by most young heart patients — there are no signs she was born with a heart condition.

“Every day, I am blown away by how full of life she is,” says Amy.

For more information about the 25th annual Save A Heart celebration, visit the program’s website or contact 734-232-6211 or UMCHC-Events@med.umich.edu.