Hadley's Story

 Hadley is our beautiful little girl, an identical twin born at just 30 weeks due to twin-to-twin transfusion syndrome. She came into the world with a congenital heart defect, and although her life was filled with hospitals, surgeries, and challenges, that was never what defined her.

To her twin sister Ruby, she was "Hadley D." To us, she was "Hadley Butts." To our family and friends, she was simply "Hads." No matter what you called her, she had a way of making everyone around her fall in love with her.

She was incredibly observant. She loved watching people, remembered everyone she met, and somehow always let Mom know exactly who she approved of. Hospital life became normal for her, but she made the best of it. We'd prop her up on a Boppy pillow in bed so she could "patrol" the unit, watching everyone pass by.

She loved saying "mama" on repeat, crossing her legs like a little lady, cuddling her favorite hedgehog to fall asleep, and clapping her feet together whenever she got excited. Some of our favorite memories with Hadley are the simple ones: family walks around the park or zoo, watching Ruby run around and make her laugh, playing guitar with Dada, reading books and singing with Mama, or happily chewing on the little sponge swabs we called "lollipops."

Hadley spent the first two months of her life in the NICU at Brigham and Women's Hospital alongside her twin sister before transferring to Boston Children's Hospital for her first heart surgery to repair a coarctation of the aorta. While the surgery went well, her journey was only beginning. An intestinal surgery, repeated infections, and chronic lung disease (BPD) kept her in the hospital for several more months.

At seven months old, Hadley finally came home for the first time. We had four incredible days together as a family before she needed to be admitted back to Boston Children's. During that admission, she was diagnosed with Pulmonary Vein Stenosis (PVS), a rare and aggressive heart disease that brought with it pulmonary hypertension, feeding difficulties, kidney complications, and monthly cardiac catheterizations to keep her pulmonary veins open.

Our lives revolved around procedures, recoveries, and hoping for good news. Every four weeks, we'd hand our daughter over to the incredible team at Boston Children's and trust them to care for the person we loved most. They became so much more than doctors and nurses. Hadley loved them, and it was easy to see they loved her too.

Our world became the four walls of a room in the Cardiac ICU. The rest of the world seemed to disappear. We weren't thinking about work, chores, or what was happening outside the hospital. We only cared about the four of us being together.

Our days became beautifully simple. We read the same books over and over, watched whatever sports or Adam Sandler movies that were on TV, played and listened to music, took trips to the garden whenever Hadley was feeling well enough, and spent hours talking and laughing with the incredible staff. Those hospital rooms were where Hadley and Ruby grew up together. As difficult as those days were, they also taught us what home really is. We learned that home isn't a place...it's the people you're with. Those four walls taught us the true meaning of love, family, and being present with the ones you love most.

In December 2023, after months of catheterizations and medications, Hadley underwent an incredibly complex open-heart surgery. What was expected to be an eight-hour procedure turned into twenty hours. She spent two weeks on ECMO, three weeks with her chest open while her body healed, and remained at Boston Children's until April recovering. We hoped the surgery would mean fewer catheterizations, but PVS had other plans. The procedures continued, the recoveries became longer, and through it all, Hadley continued to amaze us with her strength and determination.

On August 8, 2024, Hadley went in for her ninth cardiac catheterization. Despite the extraordinary efforts of the team who had cared for her throughout her journey, complications arose that could not be overcome. We were able to hold our sweet girl as her heart beat for the last time.

Hadley taught us more in her short life than we could ever put into words. She showed us what resilience looks like, reminded us to celebrate the little moments, and changed every person who had the privilege of knowing her.

The Hadley Heart Foundation was created because of her. We know firsthand how emotionally, physically, and financially exhausting it is to have a child receiving long-term care at Boston Children's Hospital. Our mission is to help ease some of that burden so families can spend less time worrying about expenses and more time focusing on what matters most...being together.

If you ever see a croissant, a rainbow, a ladybug, a daisy, a sunflower, or a heart, we hope you'll think of Hadley. Those little reminders have a way of finding us when we need them most, and they remind us that love never really leaves us. We know we'll always see a little bit of Hadley in each of them.

Her story didn't end on August 8th. It continues through every family we support, every child we honor, and every act of kindness inspired by her beautiful life.

Hadley will always be ALL HEART. ALL FIGHT.