Eli’s Angel Hands — Family raises awareness of birth defect

March 31 is CDH Awarenesss Day, click here to learn more about CDH. Click here to learn more about the Eli’s Angel Hands organization.

Two years ago, Yvonne and Brandon Gibson had never heard of a congenital diaphragmatic hernia — a birth defect that would soon change the course of their lives forever.

On Thursday, September 30, 2010 the Gibsons arrived at the Boone Family Birthplace where Yvonne would deliver their son, Eli Douglass.  It was a moment they and their 2 and a half year old daughter Emma Lauren had been anxiously awaiting.

Eli's hand print.

But immediately after giving birth, they could tell something was wrong. Eli’s entire body was purple, and he was struggling to breathe.

“In my head, I was saying, ‘he needs help,’” Yvonne said. “I was just telling him, ‘Come on buddy, breathe, breathe, breathe.’”

Eli was quickly given an X-ray, which revealed he had an opening in his diaphragm. The opening had allowed his organs to grow into his chest cavity, pushing his heart to the right side and severely inhibiting the development of his lungs.

Boone caregivers explained to Yvonne and Brandon that the condition is called a congenital diaphragmatic hernia, or CDH.  The diagnosis was a shock. Until that point Yvonne and Brandon, like most parents of CDH babies, had never heard of CDH.

“We didn’t even know what that was,” Yvonne said. “And I couldn’t even pronounce it, let alone understand what was happening to what looked on the outside to be my perfectly healthy son.”

When stable, Eli was transferred to University of Missouri Women’s and Children’s Hospital where he waited for a helicopter to take him to St. Louis Children’s Hospital.

Brandon followed Eli to St. Louis, and Yvonne joined them the next day.

On Saturday, Eli’s condition worsened. Yvonne and Brandon remember watching as dozens of caregivers worked to save Eli’s life.  But in the end, as Yvonne says, “God chose to give him wings over feet.”

Yvonne and Brandon held Eli, said their goodbyes, and he passed away in their arms.

It had been an overwhelming and devastating experience, all taking place in less than two days.

“He was only alive for 42 hours, and that was the longest 42 hours I’ve ever lived,” said Brandon.

As the family grieved and regrouped, they also sought to learn more about CDH.

Yvonne, who works at Boone Hospital as a Support Services Administrative Coordinator, was introduced to organizations for families of children affected by CDH such as Breath of Hope and CHERUBS. Through these groups, she spoke with parents who had been through similar situations.

Brandon and Yvonne Gibson, with their daughter, Emma Lauren.

The family also decided they would honor Eli’s memory by working to help others and by raising awareness of CDH.

Today, the family’s organization, called Eli’s Angel Hands, creates care packages for parents of children admitted to Boone Hospital’s Intensive Care Nursery as well as angel families who have experienced the death of an infant at the hospital. They also send the packages to CDH families outside our area.

Yvonne said the care packages are a way to assist others the same way she was supported when her family was going through this difficult time.

“All of these people were reaching out to us. Even people we didn’t know,” she said. “It was just nice to know that when you are in need, there are people out there thinking of you, praying for you and helping you.”

The family’s goal is to provide a package for every parent who has a child in Boone Hospital’s Intensive Care Nursery and every angel family.  Eli’s Angel Hands provided 80 care packages in 2011 and has given 60 so far this year to Boone, as well as sending care packages to other CDH families in other parts of the country.

The family does take monetary or item donations to help create the packages. Yvonne said any potential donors should know Eli’s Angel Hands is not a 501c3 tax-exempt organization, and thus donations are not tax deductable at this time.

Yvonne is also helping with a national effort to establish an annual CDH Awareness Day on March 31. Having an official day would help get the word out that CDH affects one in 2,000 newborns in the United States. It would also highlight the need for more research. There are still many unknowns about this birth defect and its causes.

To build momentum for a national awareness day, Yvonne and families around the country are asking their local elected officials to make proclamations on March 31.

This year, with Yvonne’s work, the City of Columbia, Boone County and State of Missouri will all recognize March 31 as CDH Awareness Day.

With the growing support for more awareness, and with the work to assist families with infants in intensive care, the Gibson family is doing their best to make sure their son’s short life has a lasting impact.

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