The first time Jen DeBouver cradled her 6-week-old son came just after he died.
Keeping a pulse on CHD
– Most causes of CHDs are unknown with only 15-20 percent related to known genetic conditions.
– CHDs are the most common cause of infant death due to birth defects.
– Roughly 25 percent of children born with a CHD will need heart surgery or other interventions to survive.
– More than 85 percent of babies born with a CHD now live to at least age 18. However, some with more severe forms are less likely to reach adulthood.
– Surgery is often not a cure for CHDs, as many cases require additional operations and/or medications as adults.
– People with CHDs face a life-long risk of health problems, such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.
– CHDs are now the most common heart problem in pregnant women.
Source: Congenital Heart Public Health Consortium
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Since his birth, baby Asher was isolated in a cardiac care incubator while doctors first repaired his heart defect, then attempted to stop his blood from clotting.
A day earlier, DeBouver had a bad feeling. Call it mother’s intuition. Call it a hunch. Call it the worst phone call a new parent could receive.
“Get to the hospital as soon as possible,” a nurse told her in the middle of the night.
By the time she arrived, it was too late. On Oct. 23, 2012, her bundle of joy, hopes and dreams had passed away. Another tiny victim of a congenital heart defect, the most common birth defect. CHDs kill more children than all cancers combined, according to the Congenital Heart Public Health Consortium.
An ultrasound first detected Asher’s heart defect. It also showed one of his hands covering his heart.
Immediately after his death, DeBouver cradled Asher in her arms while remembering her firstborn child, daughter Olivia, who was stillborn just 11 months earlier. DeBouver sobbed when Olivia died, blaming herself. She felt mostly numb when Asher died.
The mother of two was still without a family.
“I felt helpless,” DeBouver says. “And lost.”
She didn’t know where to turn or who to ask for help. Her heart was broken over her son’s broken heart. Though her loved ones tried to comfort her, she needed something more.
She found the “more” when Asher’s doctor told her that blood clots were a surging problem for hospitalized children, yet there wasn’t a support foundation in the Chicago area.
“We knew this had to change,” DeBouver says.
A few months later, she and her husband, James, created the Asher James Congenital Heart Disease& Thrombosis Foundation to offer support, medical resources and hope to other grieving parents.
“Going through my own grief, I really didn’t feel like anyone understood what I was going through,” she says.
That is, until she was invited to speak at a meeting for Mended Little Hearts of Chicago, a national organization with 90 chapters. Started in 2004, the group helps families affected by heart disease and related problems.
There, DeBouver met like-minded mothers with children affected by CHD.
“I finally felt like there were people who understood me,” she says. “Oftentimes, our society doesn’t understand the loss of a child and they want the parents to forget, move on and not remember them. But parents want nothing more than for their child to be remembered.”
DeBouver, 35, soon became the close-knit group’s bereavement coordinator. She implemented an angel memory-box program at five Chicago area children’s hospitals, as well as support meetings for bereaved families.
“I want to make sure that our lost children are not forgotten,” says DeBouver.
Through Mended Little Hearts, DeBouver met Melanie Toth, who founded the Chicago chapter after her son, Luke, was born with a congenital heart defect. He survived it, with two surgeries the first year of his life, and now lives a relatively normal life at age 7 in spite of his rare heart defect, Tetralogy of Fallot.
“I’ve watched my son almost pass away twice, but he doesn’t look sick and people don’t understand how this can be with kids who have congenital heart problems,” Toth says.
Together, DeBouver and Toth have become a dynamic duo. DeBouver also serves as bereavement coordinator for the national Mended Little Hearts chapter.
“I have made sure that the bereaved families have not been forgotten in this support group,” she says, pulling out an angel memory box that grieving parents receive.
It’s filled, in part, with a stuffed Teddy bear, a white photo box, a tea light candle holder, a locket of hair holder, a homemade “Olivia” receiving blanket in honor of DeBouver’s daughter, and a framed poem.
“Parents don’t want to hear, ‘It was God’s plan,’ or ‘At least there’s no more pain.’ We just want to be listened to, and for our children to be remembered. These boxes help do that,” DeBouver says.
Their Chicago chapter has since mended the troubled hearts of hundreds of families, and last year was awarded the organization’s group excellence award. Families at five children’s hospitals now receive angel memory boxes and “bravery bags,” a physical reminder that they’re not alone.
For Congenital Heart Defect Awareness Month in February, the group is ramping up efforts to raise awareness, and to empower parents and kids with CHD.
When Toth’s son, Luke, was younger, he thought all kids had “zippers” on their chest, in reference to noticeable scars from heart surgeries. Toth and other parents in the group are teaching their kids to be proud of their scars, not ashamed of them.
“Parents need to be their child’s best advocate, and this includes reminding them that they should rock their scars,” Toth says.
Through February, the group is hosting a “Rock Your Scar” photo exhibit at Trickster Gallery in Schaumburg. It displays photos of their children showing off their “zipper” scars, and also family photos remembering children lost to CHD.
“My every waking moment is doing something to honor and remember my two children,” DeBouver says while showing a cellphone photo of Asher. “I want something positive and purposeful to come from their deaths and from my loss.”
The couple’s Schaumburg home is adorned with baby photos of their two lost children. Each night before bedtime, they kiss photos of their children and whisper, “Good night.”