Willow: Finding Hope and a Perfect Heart

As Willow’s mother, Lauren, recalls the beginning of Willow’s medical journey, she chuckles at the absurdity of all her young daughter has overcome.

“I’m laughing now,” she says. “I was crying then.”

Complications from the beginning

Willow has had heart issues since she was born. At about 5 months old, her family learned she had four life-threatening arrythmias. She experienced cardiac arrest soon after and then complete heart block, which required a pacemaker and defibrillator.

Willow’s heart problems were being caused by a genetic difference that causes microphthalmia with linear skin defect. This condition can affect different parts of the body, but in Willow’s case, it primarily affects her heart, weakening the muscle and valves. Willow is 1 in only about 65 people in the world with this diagnosis.

Finding the right experts

Lauren, her husband, Blake, and their five boys were living in the Washington D.C. area at the time and the doctors there weren’t providing options the family felt comfortable with. Lauren was already a heart mom, having another child with heart issues, so this territory was not new to her.

The hospitals they had consulted with on the East Coast all proposed similar plans, which involved surgery on Willow’s heart valves. Even after surgery, the doctors there still didn’t predict a very positive outcome. None of the hospitals Lauren had spoken with wanted to consider a transplant because of Willow’s genetic condition.

Lauren contacted Children’s Hospital Colorado and spoke with Melanie Everitt, MD, Medical Director of Pediatric Heart Transplant. She said the team here felt Willow could have a long life and happy childhood despite the challenges caused by the genetic syndrome. The medical problems related to the syndrome were treatable and might improve with heart medications or, if the heart medications failed, she had a heart transplant.

“I remember Melanie Everitt giving us a call and telling us their plan,” Lauren recalls. “And we said yes immediately. She said, ‘You don’t have any questions?’ and we said, ‘No, we’re on our way.’”

The family packed up, moved to Colorado and hasn’t looked back.

“We came out here and found hope,” says Lauren. “The team here has been absolutely phenomenal. It feels like family – obviously it kind of is because they helped raise Willow.”

Patience, love and compassion

Willow was on the heart transplant list within a week of coming to Children’s Colorado. She was in and out of the hospital and after she experienced another cardiac arrest one day, doctors decided it would be best for her to stay in the hospital until they found a transplant match. When Willow returned, she was greeted by all her nurses and doctors, or aunts and uncles, as Lauren calls them.

“Willow probably knows every corner of the hospital,” Lauren says. “She even took her first steps in the hospital and learned to walk there.”

Willow finally got the call for a heart, but she was sick with an infection at the time and didn’t meet the requirements for the transplant. The family continued waiting. When Lauren couldn’t be there, they had a babysitter look after her, or a 24/7 best friend, as Lauren says. But Lauren and the family were there most of the time.

“We knew this could be our last months, weeks or days with Willow, so we took every day as if it was our last with her, and that was why it was a hard decision to put her back in the hospital when we did,” Lauren says. “But at the same time, I’m thinking, she's well-loved there and we know that we're very welcome there. Even with all our children in tow, everybody was always so kind to us. Then, on August 14th, we finally got the call.”

Finding the perfect heart

Because a child’s family made the amazing decision to donate, Willow finally got her perfect heart. The transplant went well. Willow’s new heart is strong and she began quickly catching up on all she had missed. Since she was in a hospital bed for much of her life, it took her a little longer to reach some milestones. She started walking around 2 years old, just before she got her transplant.

As Willow began getting healthier leading up to the transplant, she used her newfound ability to walk as much as she could. Now, that energy has continued and Willow has a healthy heart to power her. Lauren says she’s basically checking off milestones daily.

“She’s your typical 2-and-a-half-year-old spicy self,” Lauren says. “She might have a little more spice than sweetness these days. The girl knows what she wants and she usually gets it!”

That spice comes in handy when she’s playing with her five older brothers.

“We're never leaving Colorado,” Lauren says. “I don't feel comfortable leaving her team. Even if her team changes over the years, it's OK – there will always be somebody here who knows her situation.”

Some patients who have heart transplants are required to get another later in life. However, for Willow, doctors say this will probably be the only transplant she can get, due to her genetic condition.

“Unless some miracle happens or things in the medical field change, this will be her final heart,” says Lauren. “We’ve got to make this one last. Today, we just live for every day as we did before and be happy. We shouldn't have seen Willow past 5 months of age. If it weren't for all these people, from D.C. to Colorado, Willow wouldn't be here today. And I can't thank everybody enough for allowing me to see her talk and walk and just grow up. So anytime that we are blessed with another day, I just feel that we are blessed. That's how we view it. We cherish every moment we have with her.”