CHOC Children's

CHOC Pressroom


May 02, 2005

By Elia Powers, Daily Pilot - Published April 18, 2005

Fifty-three days. Most of them replay in Kim Leibe's mind.

The emotions are vivid and revisited as she flips through pages of laminated pictures, updates a webpage filled with diary entries and visits a hospital where, seven months after leaving, she is still greeted with hugs.

Fifty-three days. That was the extent of Leibe's motherhood.

But she seems a natural as she holds court over a fourth-floor room filled with young patients at Children's Hospital of Orange County, alternating between an art project and a frenetic game of air hockey.

A 31-year-old Costa Mesa resident, substitute teacher and junior high tutor, Leibe spends each Saturday morning engaging young patients in the hospital's playroom.

When Leibe's two-hour shift is over, she goes downstairs to the second floor. She visits nurses, doctors, mothers and their children.

Then she visits with Aidan.

"This is where he was," said Leibe, referring to the second-floor neonatal intensive care unit at CHOC. "I never get tired of talking about him or visiting his room. I want to be with him here."

A battle from birth

Leibe spent more than seven-and-a-half weeks with her first child, Aidan Gustavo Leibe, last fall. She delivered him on Aug. 2 at the same facility where she was born, St. Joseph Hospital of Orange.

Weeks earlier, during an ultrasound exam, doctors told Leibe that her son had congenital diaphragmatic hernia, a birth defect that affects one out of 2,500 children and prevents proper lung growth.

Leibe said she had an easy pregnancy. But Aidan's days were laborious.

Hours after he was born, Aidan was transferred to CHOC, where nurses hooked him to an artificial breathing machine.

Unlike most newborns, Aidan wasn't crying. He wasn't making much noise at all. He didn't have the energy.

Leibe and her husband Matt spent 10-hour days in the infant-care unit with Aidan, whom doctors gave a 50% chance of survival.

"I was telling him he could make it through it," Leibe said. "But I was worried the whole time about him."

In his critical-care unit, Aidan was surrounded by children with similar conditions. Leibe was surrounded by parents feeling similar anxieties.

Longtime nurse Karen Stroud, RN case manager in the neonatal intensive care unit , said Leibe comforted many of the families in adjacent rooms. And Stroud said she felt a special bond with the Leibe family.

"Aidan and I shared a birthday, and he became one of my focal points," Stroud said. "We spent extra time together, and Kim endeared herself to the entire staff."

She also had reporting duties. Aidan's health was documented each day on a family-run website. The paragraphs, once buoyant, took on a despondent tone by the middle of September.

The family was together on Sept. 23, the day Aiden died.

Grieving and giving back

Two weeks after his death, Aidan's relatives walked in his memory at the 14th Annual CHOC Walk. They raised more than $2,000 for the hospital.

Leibe kept in contact with friends she made in the intensive-care unit.

She wrote to Michael and Becky Daly, whose son, Patrick, shared a room with Aidan and was born two days after him.

Patrick, who also had congenital diaphragmatic hernia, left the hospital two-and-a-half weeks after he arrived.

"We were fortunate our son lived," Becky Daly said. "It was heartbreaking to see Kim go through everything she did. She helped provide emotional support for me and other parents. Her courage is amazing to me."

Leibe continued to visit CHOC after Aidan's death. She came during the day and often sat by herself in the lobby, her tears hitting the pages of the journal where she wrote about her late son.

Aidan's final days in the hospital still haunted Leibe, but she couldn't stay away.

In December, she decided to become a volunteer.

"I still wanted to be involved," she said. "I hated how I felt during the whole thing. This big event happens in your life, and you want to help others know that there is hope and that somebody cares."

Leibe visited parents on the second floor and reunited with the medical staff that looked after Aidan. But the majority of her time is spent upstairs as a Child Life volunteer, where it is her turn to take care of young patients.

She is one of 90 volunteers who work in Child Life, according to Julia Siebel, CHOC's director of volunteers services. The hospital has about 400 volunteers, and Siebel said she has heard of at least 10 people who have lost children and come back to help.

"Kim is one of the most enthusiastic volunteers," Siebel said. "I am in awe of someone who is that committed and is willing to come back after something that traumatic."

In late May, Leibe was accepted into the Child Life internship program at CHOC. She will be prepping children for surgery and keeping them company during their hospital visits.

Leibe said she hopes to eventually become a Child Life specialist who works full-time at the hospital.

By that time, she should be a full-time mother, as well.

Leibe is more than 15 weeks pregnant and is expecting to give birth to a girl in early October.

Becky Daly donated her maternity clothes to Leibe as a sign of her appreciation.

"I want everything for her to be smooth," Daly said. "When she holds Patrick, she shows him so much love. She's so happy for him, even though I know it's a personal struggle."