Tragedy brings life and hope to others

People immediately fell in love with Alex Young. It was impossible not to fall for his vivacious spirit, boundless energy and charm. The curly, golden-haired toddler had turned 2 on his March 20 birthday, and his mother cooked all of his favorites - steak, shrimp and strawberry shortcake, topped with two candles.

 

“Alex was my miracle baby,” said his mother, Jennifer Young, who remembers going through a bad time in her life when her youngest son was born. “Alex pushed me to work harder in getting my life together and focus to be a better mother.”

Alex loved watching cartoons on TV; wrestling with the family dog, Karma, a 90-pound chocolate lab; playing outside while toting around his favorite companion, Stitch, an alien dog from the Disney movie “Lilo and Stitch.”

He especially loved following around his older brother, BrIce, 8.

No one could have predicted what happened to the Ladson toddler on Memorial Day weekend – when he was brought into the Pediatric Emergency Department at MUSC Shawn Jenkins Children’s Hospital. It was the night of May 23.

Jennifer was at work that day and received a frantic call from her son’s babysitter, informing her that Alex was in a pool accident. She advised her to rush downtown to the hospital. Nothing could have prepared Jennifer for the shock and disbelief she experienced when doctors told her that Alex was a drowning victim, and his prognosis was grave.

Alex was soon placed on life support, allowing the family to arrive and Jennifer to plan her next steps.

Elizabeth Emrath, M.D., was one of the doctors on the team caring for Alex from the time he was admitted to the hospital. Emrath evaluated Alex’s condition and conducted tests to assess his brain function. She later spoke to Jennifer about his diagnosis and discussed end-of-life care options, including organ donation.

For Jennifer, the decision wasn’t easy. Processing the news of Alex’s critical condition along with having to make end-of-life decisions all at once was stressful, confusing and scary for her. Jennifer’s father had just died 13 months earlier, and here she was struggling to accept the reality of now losing her baby boy.

Jennifer knew a little about pediatric organ donation. She supported a close friend who had lost her baby to sudden infant death syndrome (SIDS) and made the “gift of life” choice of organ and tissue donation.

According to Kristine Neal, communications director for We Are Sharing Hope SC, children as well as adults can become organ and tissue donors.  When a pediatric patient progress to brain death, or a parent or family member makes the decision for mechanical support to be withdrawn, it is then a child can become a donor “hero.” 

“Most of the time, families are unaware of organ donation,” said Emrath. “We provide some guidance as to what’s happening to the patient: What are the concerns of the medical team and the patient’s prognosis and outcome. If a family asks about organ donation, we guide that conversation and steer that transition to the We Are Sharing Hope SC team for better insight and detailed information.”

We Are Sharing Hope SC is South Carolina’s federally designated organ and tissue recovery service. It provides organ and tissue donor services to more than 80 hospitals throughout the state.

A We Are Sharing Hope SC family support counselor was assigned to Jennifer and her family. That person worked with Emrath and MUSC’s multidisiplinary care team of nurses, medical specialists, technicians and social workers to answer questions and serve as a resource for the family. More importantly, she helped Jennifer make informed decisions about Alex.

On the second day, Jennifer completed the paperwork to initiate the organ and tissue donation process that would make Alex a donor hero to three waiting recipients. Alex’s heart was donated to a pediatric patient in Ohio and his kidneys went to two adult patients in North Carolina. Alex also made history as the children's hospital's first organ and tissue donor since the facility opened its doors on Feb. 22.

To help Jennifer and her family begin the grieving process, MUSC Children’s Health teams provided compassionate support to them. At times like this, it is the role of Child Life Services, Pastoral Care Services and the Palliative Care team to work with We Are Sharing Hope SC staff to help family members begin to cope with the loss of their loved ones, providing grief counseling and offering ideas such as creating special personal memory items like footprints and hand molds or keeping locks of hair, to memorialize them.

According to Emrath, the children's hospital has also established a new bereavement team whereby a child life specialist checks in on families every few months. The feedback from families so far is that the service is valuable and most appreciated.

“Unfortunately, we see this more than we ever want to in the hospital,” said Emrath. “I wish every child that comes into our unit got better, and I could make them better. But we can’t. This is something that we can do for patient families that I think they’ll really appreciate and remember.”

Jennifer still struggles with the pain of loss. “I’ve got to focus on the good and not the bad,” she said, reflecting on the past six months. “It’s still very hard for me.”

On Sept. 12, several of Jennifer’s friends organized a memorial bike ride in honor of Alex. They named it #foreverahero. Nearly 55 motorcycle participants rode to five different Lowcountry establishments in the Ladson, Goose Creek, Ridgeville and Eutawville areas – riding about 100 miles in all. They gathered donated items, held an auction and collected proceeds and donations to help to pay for Alex’s funeral expenses.

The group plans an even larger bike ride event in 2021 around Alex’s birthday. They plan to team up with the children's hospital's ICU team, We Are Sharing Hope SC and others in the community to host an organ and tissue donor registration drive, with proceeds going to the organ procurement organization.

For now, Jennifer focuses on Bryce and her family and managing her way through this tough and personal family loss. She hopes Alex’s legacy will live on in the people and families whose lives were changed through organ donation.

“I believe Alex was put on this Earth to save people. And he has,” she said.