Winnie’s Story

A Rainbow Hanging Over

Peggy and her husband, Brett, first knew something was wrong with their daughter Winnie during her 20-week ultrasound. The appointment was taking longer than usual, and the tech was focusing a lot on Winnie’s heart. After that, everything happened so quickly.

The Weighting Game

Doctors believed Winnie only had three chambers in her heart, instead of four. The testing to confirm her heart condition also revealed that she had Down syndrome.

Now a high-risk pregnancy, Peggy had regular appointments to monitor Winnie’s growth and any changes in her heart right up until delivery.

Winnie was delivered without complication or additional concern and was able to go home shortly after. Because open heart surgery was eminent for Winnie, Peggy and Brett did everything possible to make sure she was eating and gaining weight, so she would be ready for surgery.

With the help of their medical team, they stayed on track and finally had a surgery scheduled. They were so relieved to finally be getting Winnie’s heart the help it needed.

Then Winnie came down with a fever and a cold and the surgery had to be canceled. They weren’t emotionally prepared for the news they got next.

Game Changer

Right after the surgery setback, Peggy and Brett found out their surgeon was leaving the hospital and they didn’t have enough time to reschedule before he was gone. Suddenly, they had to work out alternate surgery plans and locations – a daunting task on a tight timeline.

Eventually, they found themselves at Children’s National Hospital, learning a whole new hospital system and building trust with a new team of doctors. It was completely overwhelming – and
farther away. This presented a whole new challenge.

They didn’t know how they would be by Winnie’s side during her surgery and recovery while also caring for their 4-year old. During this stressful time, when they needed each other most, splitting up the family didn’t feel like an option.

Little Heart Warrior

When Peggy and Brett found out there was a room available at Ronald McDonald House, they were relieved to have the opportunity to stay together during such a fragile and emotional life event. “Ronald McDonald House became our sanctuary, our place of calm and much needed respite. A ‘home-away-from-home’ where we could get away from the revolving door of medical staff and beeping machines.”

During this time, music became Peggy’s sanctuary, whether it was singing to Winnie in the hospital or giving herself a quiet moment to reflect. One “Winnie anthem,” as Peggy began to call them, that always centered her and gave her strength was “Rainbow” by Kacey Musgraves.

When she walked into her room at Ronald McDonald House, one line really stuck out to Peggy: “Yeah there’s always been a rainbow hangin’ over your head. It’ll all be alright.”

The windows of the room are lined with colorful hearts. That’s where you come in! The hearts hold the names of our Loyal Hearts Society – generous supporters, like you, who provide a rainbow of support.

Thanks to you, a room, a home, and the resources and care they needed were there when they needed it most.

The Littlest Hero

Less than a month later, Winnie underwent a four-hour surgery to patch two holes in her heart.

It was an astounding success! She recovered in just 5 days – half the time expected. “Knowing we were literally a 5-minute drive to the hospital gave me invaluable peace of mind that we could ‘come home’ and take care of ourselves in order to be stronger the next day for our daughter.”

Winnie, the “little heart warrior,” is doing so much better now.

Peggy says, “She has taught all of us so much and shown such incredible strength through all that she has endured in her short 6 months of life — she is truly our hero.”

And you are truly our hero. Thank you for everything you do to help families like Winnie’s stay close to each other and the care their child needs.