Rowan Nickerson’s family encourages tissue donors

The anniversary of the Nickersons’ unexpected loss of their youngest daughter and little sister is approaching.

With it comes the expected overwhelming emotions. For the family, it’s also a chance to remember Rowan’s life, and how she helped others after her death.

“It has become evident to us we are starting to grieve more,” said Rowan’s mother, Olivia Nickerson.

The infant was found unresponsive at the end of a nap at a Wenatchee daycare when she was 7 months old. Doctors say Sudden Infant Death Syndrome (SIDS) was the cause. In the hours following, Rowan’s parents made a snap decision to share their baby with other children who could still be saved.

April is National Donate Life Month.

The Renton-based tissue bank that helped with the exchange of Rowan’s heart valves, LifeNet Health, is taking the opportunity to raise awareness for giving tissue and organs.

Every year the nonprofit facilitates 46,000 tissue transplants and implants in the Pacific Northwest. Its website describes the umbrella LifeNet Health organization as a global leader for treatments that help restore function to organs and tissues, and the world’s largest provider of implants and organs used in lifesaving transplants.

Pediatric heart valves are especially desirable. About 10,000 babies will have a critical heart defect and require a corrective procedure before they turn one.

Northwest general manager Levi Anderson said there are many facets to the education of donating. A community hospital of any size can be effective, if properly trained, and if people know who to contact for support, he said.

LifeNet Health staff know how to have the challenging conversations following a death, Anderson said. Even if someone has agreed to be a donor, which is listed on their driver’s license, someone still needs to determine what exactly can be taken. Family and friends will most likely experience strong emotions in those moments, he said.

“They don’t want to make the wrong decision on behalf of their loved ones,” Anderson said. “The best way to alleviate those concerns is to have that conversation up front.”

He emphasized no judgments are passed if people refuse, and notes that most major religions are not opposed to donations. He also stressed that no one should rule themselves out of being a potential donor because of age or physical conditions.

The nonprofit works to find new ways to pair tissue and organs with patients. Something that may not have been an option in the past could be a reality today, he said. The nonprofit also focuses on research.

For Olivia Nickerson, the choice wasn’t worth second-guessing. She and her husband, Josh, decided immediately that Rowan would donate. She said she has never regretted the gift, and instead feels so grateful they were asked.

“My daughter is still living on because someone asked us a very important question,” she said.

Olivia Nickerson and her husband spoke publicly about the loss of Rowan last fall. The couple hoped by doing so they could make families more aware of SIDS and tissue donations. 

Both parents pointed to research being conducted by Dr. Daniel Rubens at the Seattle Children’s Hospital. The anesthesiologist’s work aims to pinpoint a cause for the syndrome; inner ear defects and potentially a buildup of carbon dioxide may be at the root of the issue. If explained, 2,000 babies could be saved each year in the United States.

The hardest part of the donation process was the conversation on what Rowan would give, Nickerson said. LifeNet Health staff the family worked with were incredibly kind, she said.

After Rowan died, the Nickersons moved to Sultan with their daughter, Willow, who was 2 years old at the time of her sister’s death nearly two years ago. They now live closer to Josh Nickerson’s two older daughters, Ryleigh and Aubrey.

Olivia and Josh Nickerson recently started counseling. They often discuss Rowan. Her parents are learning about how others usually grieve differently; mothers become more verbal, and fathers can become more withdrawn, Olivia Nickerson said. Processing their daughter’s death is ongoing, she said.

She’s noticed few resources exist for parents who have lost an infant. Olivia Nickerson has spoken with other mothers through online forums who say they were not asked if their child would donate, but wish they had been.

She said their stories broke her heart to hear. Through LifeNet Health's Thanks 2 You program, the Nickerson family learned in June two infants received Rowan Nickerson’s heart valves. The donations saved their lives. She said if the receiving families ever wanted to reach out, they would be welcomed.

“I cannot tell you what it means to me,” she said. “To know that her life had such an impact means the world to me.”

Olivia Nickerson said knowing Rowan helped other families has given her hope. It has made her proud of her daughter. In some ways that understanding fills in for the many experiences they will miss out on together. She encourages staff and families to be aware of and ask about the options for donation, when the time comes.