Brooklyn Center woman honors daughter's memory through Ava's Angels
By Jennie Olson - Sun Newspapers
Published: Wednesday, November 10, 2010 1:17 PM CST
When people ask Brooklyn Center resident Lisa Daher if she has children, she often pauses to consider her response.
"I feel bad saying 'no' because it's not true - I do have a child," Lisa says.
Her daughter, Ava Rose, was stillborn April 14, 2009 - "born with angel wings," Lisa says.
While Lisa was pregnant, Ava was diagnosed with Congenital Diaphragmatic Hernia, a birth defect of the diaphragm that causes abdominal organs to push into the chest and prevent proper lung formation.
The Association of Congenital Diaphragmatic Hernia Research Awareness and Support organization says CDH occurs in one of every 2,500 babies and leaves the child with a 50-50 chance for survival. The doctors gave the Dahers the option to terminate the pregnancy, but the couple chose to continue despite the diagnosis.
"If she were to make it, she would lead basically a normal life," Lisa says. "A lot of these kids have no problems at all other than maybe some minor issues."
The loss changed life forever for Lisa and her husband, Rich. But through the experience, Lisa founded Ava's Angels to help other families through their pain.
A parent's worst nightmare
Lisa and Rich were thrilled when they found out they were having a baby. But their world was changed when Ava was diagnosed with CDH.
Already five months into her pregnancy when she learned the CDH diagnosis, Lisa had grown attached to Ava she says, and could feel her moving. She couldn't imagine ending that overnight.
"I wanted to do everything I could do to give her a shot," Lisa says. "I would have always wondered if she would have made it."
But two months later, the Dahers received even more bad news - Ava had a heart defect called Ventricular Septal Defect, in addition to CDH.
VSD prevents the wall that separates the right and left ventricle of the heart to completely form, leaving a hole. The hole can allow too much blood to pump into the lungs, leading to heart failure. The complications are fatal.
"It was extremely hard, because people would see that I'm obviously pregnant and come up and congratulate me and ask if I was excited," Lisa says. "No one expects to hear, 'Actually, I'm not. My baby is going to die.' The last month or so, I was just trying to prepare myself about how I was going to say goodbye to her."
A month later, over the Easter weekend, Lisa felt Ava stop moving. Ava passed away due to the complications April 14.
Lisa began researching CDH shortly after learning the CDH diagnosis and found blogs and Caring Bridge sites of mothers who were dealing with the same diagnosis. One organization she discovered was Project Sweet Peas, formed in July 2007 by three mothers who had experienced the pain of having a child in the Neonatal Intensive Care Unit. Project Sweet Peas donates care packages to these families.
Wanting to get involved, Lisa founded Ava's Angels as a local Sweet Peas chapter. Ava's Angels donates to the University of Minnesota Medical Center and Ronald McDonald House, among others.
"Going through this experience is life changing," Lisa says. "Unless you have been through it, you can never truly understand. Our goal with this project is to provide some source of comfort, no matter how small, to families going through similar situations."
Donated items include baby blankets, disposable cameras, picture frames, stuffed animals, baby lotion and chapstick, along with crossword puzzles and games for the parents to do while they spend extensive time in the NICU. Since many parents are uprooted during this time, Sweet Peas collects and donate travel toiletries as well.
This April, Project Sweet Peas recieved a $25,000 Pepsi Refresh Grant, which enabled it to create more care packages and start additional local chapters. The organization now has 18 projects in 16 states.
"In this situation, everyone's just so helpless," Lisa says. "One of the most tragic things is losing a child or being faced with that. We just try to help."