Mother gives after her loss

Elia Powers

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.”