If a single day could capture the fabric of a children’s hospital, it would be when tragedy brought Sheldon and Victoria Clark to their son’s crowded hospital room. Together with family, and friends they had just met, they pledged their love to each other before saving the lives of strangers.
On the eve of a July beach wedding last year, the couple’s 7-year-old non-verbal autistic son, Marvin, drowned in a hotel pool. Sheldon and the hotel manager immediately started CPR before paramedics rushed him to Johns Hopkins All Children’s Hospital where doctors and nurses exhausted all efforts to save him. But the handsome, blonde-haired ring-bearer who loved Sponge Bob cartoons and listening to ABC songs on YouTube was gone. The couple’s worst nightmare had become reality.
Confronted with excruciating grief as machines kept him alive in the pediatric intensive care unit (PICU), Marvin’s parents didn’t want others to feel their heartache. “We can at least help another family so they won’t feel what we’re feeling,” Sheldon told his son’s care team as they discussed organ donation. “I think that is the closest example of the Gospel that we have on this side of heaven,” would later recall Kelsey Davis, APRN, charge nurse in the PICU the day Marvin was admitted.
About 106,000 Americans are waiting for a transplant, says Kristen Miranda, public affairs coordinator for LifeLink Foundation — a non-profit organization dedicated to life-saving organ and tissue donation. And little Marvin was about to save three of them.
Marvin’s parents later learned his liver saved a 4-year-old boy. His kidneys saved the life of a 22-year-old man and a 44-year-old woman. “When I got the letter in the mail, I bawled my eyes out full of love,” says Sheldon, who called his son “Turkey” because of his November birthday. “One of my goals in life is to stop some of the hate in the world. This news makes me honored to be his father.”
Nationally, 1,900 children under age 18 are on a wait list for organ donation. Twenty-five percent of those are under age 5. “One organ donor has the ability to save up to eight lives and have up to 75 lives impacted through tissue donation,” adds Miranda, whose organization serves 64 hospitals in 15 counties in Florida.
While Victoria and Sheldon’s selfless decision to help save others was underway at LifeLink, Sheldon knew he couldn’t lose Victoria too. “Let’s do this while we still have Marvin,” he said. The couple’s desire to wed at their ringbearer’s bedside sparked a legion of Johns Hopkins All Children’s Hospital staff members to rally. This tragic day was about to epitomize their limitless compassion for families.
“I called to have flowers delivered to make a bouquet when I heard about the wedding,” recalls Davis, “but it was going to take too long. So, I called my dad to run to Publix.” He left work immediately. She wrapped the white roses he rushed over in blue ribbon while Kristen Celona-Jahn, clinical manager in the PICU, went down to the hospital giftshop to buy a necklace for the bride. With the help of another nurse who donated her Daisy nursing award pin, they fulfilled the bridal tradition of “something old, something new, something borrowed and something blue” for Victoria.
A hospital chaplain wrote and officiated the impromptu ceremony. “This is an unusual place for a wedding, but because Victoria and Sheldon’s beloved son Marvin is here, it is a perfect place,” her opening prayer said. While holding Victoria’s hand as they simultaneously touched Marvin, Sheldon recited the vows he had planned for their beach wedding. “The nurses with tears in their eyes gave me strength to go on,” Sheldon recalls. “Everyone was there for the love of Marvin.”
Following their vows, family and staff members gathered outside the hospital where security officers saluted as Victoria and Sheldon raised a Donate Life flag, which flies whenever a child’s organs are donated to save another family.
“Even in really bad days, there can be joy in the way people help each other. It may not be a joyful moment, but we can make a joyful end for families,” says Kay Rogers, R.N., who has also arranged for a teen patient to say goodbye to his dog and held a baby for hours with other nurses so the infant could pass away while being held.
“They don’t prepare you for these situations in medical or nursing school,” says Laura Drach, D.O., division chief for the pediatric palliative care program and former bone marrow transplant nurse. “We don’t have cures for all the children, and it can take a toll on the health care team. Anybody who says they don’t bring things home with them is telling a little fib. It makes me squeeze my child a little tighter at night.”
“There are a lot of misconceptions about pediatric palliative care,” Drach says. “It’s very different than what people know in the adult world. Hospice and palliative care are often confused. Our role is to take the journey with families and understand what’s important to them. Palliative care is about improving the quality of life during serious illness and helping families live life to the fullest. It’s not about death and dying.”
She and her team meet each morning before visiting approximately 30 patient families each day. They review each case in detail and plan their lives in pencil. “There was a Mother’s Day weekend when I just couldn’t let a mom lose her child alone on Mother’s Day. My family knows what I do for a living. We’d have other Mother’s Days.
Organ donations turn something tragic into something lifegiving for another family, Drach says.
“Marvin was just a regular kid, but he did so much good,” recalls Sheldon. “TURKEY” MARVIN RILEY CLARK adorns his headstone. But Drach and Davis have another name for the little boy whose organs saved three other lives.
The United States achieved its 1 millionth organ transplant this month. The United Network for Organ Sharing (UNOS), the nonprofit organizing the U.S. organ donation and transplantation system under contract with the federal government and in partnership with the nationwide organ donation and transplant community, launched a website, Living it Forward, to encourage donor families, recipients, transplant professionals and others to celebrate the milestone.