The moving way CHOC supports families of pediatric organ donors

Dozens of staff lined the hallway making the route from CHOC Children’s Hospital’s pediatric intensive care unit to its surgical center, offering silent support as a hospital bed came down the aisle.

A family followed alongside the bed, preparing to give the child it carried a last kiss goodbye before their final act of bravery after a life-ending illness or injury: donating an organ to a stranger in need.  

This somber ceremony is CHOC’s “Walk of Honor,” a practice designed to honor CHOC families’ courageous and selfless decision to donate their child’s organs upon their death.

“Our PICU nurses recognize the pain and loneliness these families feel when leaving the hospital without their loved one and are determined to make their last walk out a dignified one,” says Alisa Brown, the PICU’s nurse manager, who helped launch the practice.

As the anniversary of CHOC’s first Walk of Honor approaches, Alisa will speak later this month at the annual symposium for OneLegacy, a nonprofit organ donation advocacy group based in Southern California that works closely with CHOC.

At the upcoming symposium, Alisa will discuss CHOC’s Walk of Honor and a complementary flag-raising ceremony, and how both have impacted CHOC families and staff alike.

Support leaving the hospital

The flag ceremony bookends the Walk of Honor, ensuring that families are supported both when bringing their child to the operating room and when leaving the hospital to begin a new reality without their child.

After they say their final goodbyes and their child is pronounced deceased, the family is escorted by CHOC’s team outside. There, a distinctive flag is raised to commemorate their life-saving gift. A reading and moment of silence punctuate the ceremony. The family also receives a flag to take home.

The OneLegacy and Donate Life flag flies outside CHOC Children’s Hospital to commemorate a patient’s life-saving gift of organ donation.

“This is our way of ensuring that these families are not walking out of the hospital alone and that they are thanked and honored for their courageous gift before leaving CHOC Children’s Hospital for the last time,” Alisa says.

The flag flies outside the hospital for a week, serving as a reminder to all who pass below of a CHOC family’s ultimate gift.

“When people see that flag outside, it reminds us why we’re here,” Alisa says. “It’s easy to get caught up in what’s going on in our lives, but this puts everything in perspective.”

Easing grief

The PICU’s goal is to provide the opportunity for organ donation to all families whose child may be eligible.

“One organ donor can save five different lives and it’s something so healing for these families,” Alisa says. “It helps with grieving process. It’s just a really powerful thing.”

The Walk of Honor and flag ceremonies are a small way for CHOC to thank and honor these families and their selfless gift.

Ceremonies are held only with a family’s permission, and the CHOC team works to make them as personal as possible. For example, one family’s ceremony included the child’s favorite music.

“For the families, it changes their memory,” Alisa says. “A mom told me, ‘You gave me a positive memory from the worst day of my life.’”

The surprising impact on staff

The ceremonies have had an unexpected impact on CHOC staff as well.

Processions draw staff from all over the hospital campus and from a range of disciplines, including clinicians, dietary workers, environmental services staff and administrative employees.

“After we did the first ceremony, I had 30 emails and texts from colleagues saying thank you for letting them be part of it,” Alisa says. “We did this to honor the families and to thank them for their courageous gift, but it’s turned out to be a huge, impactful thing for the entire organization. It’s made us more cohesive.”

Both CHOC Children’s Hospital and CHOC Children’s at Mission Hospital recently earned silver recognition for their efforts to increase organ, eye, and tissue donor registrations, through the 2019 Workplace Partnership for Life (WPFL) Hospital Organ Donation Campaign.

CHOC Children’s Hospital in Orange and CHOC Children’s at Mission Hospital both earned silver recognition through the WPFL Hospital Organ Donation Campaign.

The WPFL is a national initiative that unites the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), and the organ donation community with workplaces across the nation in spreading the word about the importance of donation.

Learn how to become an organ donor.

CHOC Helps Parents with Prenatal Surgery Planning

CHOC surgical servicesSome babies are born with complex conditions requiring surgery during the first few hours following birth. From the moment prenatal testing reveals an abnormality, CHOC Children’s is ready to help with the prenatal care and birth planning necessary to ensure the best-possible outcome.

CHOC has a trained and experienced team that includes perinatologists, neonatologists, pediatric surgeons and NICU nurses to guide families through the months before delivery. And families are essential to the planning process.

“The well-being of the child is surprisingly dependent on the well-being of the family, both psychologically and emotionally,” said Dr. David Gibbs, division chief, pediatric surgery, CHOC Children’s Specialists. “Preparation helps the family cope better, and the family that is coping better is able to provide better care for their child.”

According to Dr. Gibbs, recent advances in the care and outlook for babies born with abnormalities have come from closer prenatal coordination with perinatologists and families, combined with highly specialized neonatal intensive care. The CHOC NICU is rated by the American Academy of Pediatrics as a Level 4 NICU, the highest designation available and given only to facilities that also provide onsite surgical repair of serious congenital or acquired malformations.

That immediate access to the full NICU medical team, resources and support is critical for babies born with gastroschisis, a condition that requires surgery within the first hour following birth, and omphalocele, which must be corrected within the first few days. For the smallest and sickest, CHOC’s Small Baby Unit offers additional support to help babies grow and recover more quickly with fewer infections and setbacks.

For babies born with congenital diaphragmatic hernia, the CHOC Surgical NICU provides the optimal environment in which to stabilize and gain strength before surgery. One room inside the CHOC NICU converts into a state-of-the-art operating room, allowing pediatric surgeons to perform delicate procedures within the unit.

And babies born with congenital cystic adenomatoid malformation (CCAM) may actually get to go home for continued evaluation months before surgery.

Dr. Gibbs added that an important element of prenatal planning is deciding in advance where your baby will be born. Moms who know their baby will need surgery may choose to deliver at a hospital that is near a pediatric facility like CHOC. When the baby is born, the CHOC Transport Team is ready 24 hours a day to transport the baby to CHOC from hospitals throughout the region. Specially trained and equipped, this team uses ground and air transportation to travel to and from hospitals throughout Orange, Los Angeles, Riverside, San Bernardino and San Diego counties — and even beyond.

“We expect most children will do well and have normal lives,” Dr. Gibbs said. “But the first step is meeting with the perinatologist, pediatric surgeon and NICU team. Starting that relationship as soon as possible will make the process of coping with what may seem to be an overwhelming process a lot easier.”

CHOC’s surgeons provide cardiothoracic surgery, gastrointestinal (GI) surgery, general surgery, neurosurgery, urological surgery, otolaryngological (ENT) surgery, plastic surgery, ophthalmologic surgery and orthopaedic surgery.

Learn more about surgical services at CHOC.