After 30 years holding the hands of parents and children as they say “I love you” one last time, a local nurse wants to make saying goodbye a little easier.
On February 26, 1985, a 26-year-old Carol White was admitted to a Western Washington hospital to give birth to her second child.
“I just had a feeling […] I woke up that morning, felt some labor pains and just had this feeling that something wasn’t right,” recalled White. “So they looked at me like, they’ll look at you cross-eyed like, ‘OK, lady can we just get through this, please?'”
White gave birth to a boy, Kyle, and her instincts were right.
“My husband was standing with a camera getting ready to take these pictures, and our son was born with an acute bilateral cleft pallet. The doctor was like, ‘Oh no,’ and all this crazy chaos starts happening,” said White.
At first, doctors wouldn’t let Carol see her baby because they were worried the young mother wasn’t prepared for what she’d see. Carol insisted and she got to hold her baby. That would be it.
“They had taken him into the nursery. They had to do a Gavage Feeding, which is a tubal feeding. Unfortunately, the tube didn’t make it into his tummy as it should have and it went into his lungs. He became critical instantly,” said White.
Kyle was rushed to Seattle Children’s Hospital and was put on life support.
Ultimately, White and her husband Greg faced a decision no parent wants to weigh.
“He didn’t make it. He wasn’t able to make it. For us, what it had come down to (was) we had to make the decision on whether we were going to discontinue life support,” she said.
White got to hold Kyle one last time.
“We’re sitting in this little room and we’re holding this precious baby and every few moments the doctor would come in with the stethoscope and say, ‘excuse me’ and hold it to his chest. If I ever wanted to reach out and touch someone, it was then, because I thought, ‘What are you? Can you go away?'” said White.
From beginning to end, she said her son’s death was impersonal. It was not the goodbye they had hoped for.
“That was something Greg and I had to experience alone. In the hospital, as wonderful as these people are that work at Children’s – and they are – you’ve got interns circling these units, because that’s what they’re doing, they’re learning. But these families are trying to cope with the scariest thing in their lives among this very clinical environment,” said White.
But life had to continue for Carol; she had a daughter to care for and a husband who was grieving, too. Though she tried, the deep emotional scars of losing a child destroyed her.
“I spent a lot of years getting lost from that. I will tell you, I mean it took a real toll on our family, not understanding how to grieve,” White said.
Instead of properly grieving, Carol numbed the pain with prescription pills. During that time, she met Suzanne Gwynn. As a nurse for the last 30 years, Gwynn has helped many families cope with a child dying.
“It’s an honor to be there. When you’re standing there and you’re holding someone’s hand and you’re talking them through a process, it’s very much like giving birth,” said Gwynn.
No parent wants to imagine having to say goodbye to their child. But if it happened, would you want to do that in the comfort of a home surrounded by loved ones, or in a hospital room surrounded by tubes?
Gwynn wants to put an end to the heartbreaking stories like White’s and change the way children, and their families, experience end-of-life care. She said she intends to do that by opening the Ladybug House.
“It’s from the beginning of diagnosis to the end of life (care.) It’s quality of life and support not only for the child but for the entire family,” she said.
Gwynn’s vision is that Ladybug House would offer the comforts of home with the expertise of a hospital. Every family member would have a place to stay there so that they all get to spend quality time with the child.
The Ladybug House would have a kennel so that a child can be with their beloved pet (a common request). It would have a kitchen for home-cooked meals. It would have a support network to soften the blow of losing a child.
“It’ll be that break. When you’re taking care of a child – a chronically ill child – for a long time, it’s taxing on a family emotionally, psychologically. This is the place you can go and we’ll take care of you. When the time comes, if you need end of life care, we are the other option,” Gwynn said.
The Ladybug House just received its non-profit status. Now, Gwynn is trying to find land and financing. Her ambitious goal is to have it open by the fall of 2017.
“It really is a blessing. I hold a lot of people in my heart and I have learned so many lessons. I think that I’m just the spokesperson,” said Gwynn.
The Ladybug House name was inspired by one of her patients. On December 31, 2006, 18-year-old Hunter Simpson was admitted to her hospital suffering from symptoms from a brain tumor he had battled for a year.
He died that night and when she and other nurses were moving his body from his room, a ladybug landed on his shoulder. Gwynn was stunned because this happened in the middle of the winter and inside a hospital. She took it as a sign. She found that in many cultures, ladybugs are considered protectors of the soul.
The Ladybug House doesn’t exist in a physical form yet, but it’s already changing lives. After White found Gwynn, she found the courage to finally seek help for her addiction to painkillers.
White spent 30 years dulling the pain of her son’s death. She’s now 11 months sober. Life, White said, has never been more beautiful.
“I know that Kyle was brought into our lives for a reason and I know I was chosen to be his mom and I also knew that he was the greatest blessing I’d ever received. There would come a day when this would matter,” said White.
Said Gwynn, “Our tagline for Ladybug House is, ‘Celebrate every day.’ Our mission statement is, “If we cannot add days to the life of a child, we will add life to their days.”