Solace in helping others Support Group was born out of a mother's grief.
BY: Kurt Moffett
Sara Walsh's son, Joey, lived for just four hours, but the Wolcott woman still cherishes the short time she had with him and she wants other mothers in similar situations to be treated with the same dignity she received.
In February, Walsh started "Joey's Wings," an offshoot of an online support group for parents with infants in an intensive care unit. She sends care packages to John Dempsey Hospital at the University of Connecticut Health Center in Farmington for parents with ill newborns.
"I want them to know they're not alone," Walsh said. "You feel so helpless when you're going through something like this."
Joey was born Nov. 30, 2007 at Yale Children's Hospital with an incompletely formed diaphragm, a condition known as congenital diaphragmatic hernia, or CDH. The diaphragm is a thin layer of muscle separating the chest cavity from the abdomen.
When it doesn't form correctly, the intestines can move into the chest through the hole in the diaphragm and compress the lungs. The pressure is often so severe the lungs cannot develop properly and the newborn can have serious respiratory problems.
In Joey's case, Walsh said his condition pushed his heart against the right side of his chest, which was affecting his lung development. He also had a heart defect.
Walsh said she learned that only 50 percent of CDH babies survive. Joey was born without a right lung. His small, fragile left lung popped during ventilation. His chest cavity was filling with air and his organs were shutting down from the lack of oxygen. He was taken off a ventilator and passed away.
Walsh, who has two other children, ages 4 years and 18 months, said Joey taught her to appreciate what she has, not what she lost. Despite knowing early in her pregnancy that her baby had CDH, she said there is no way to completely prepare for the loss of a child.
She said she is grateful to the hospital staff for providing Joey with an outfit and a stuffed animal, plus hand and foot print molds and a journal with a lock of his hair for her. Those mementos have helped her cope with the loss.
"It's such a small gesture," she said, "but it makes a huge impact."
The online support group is called Project Sweet Peas. Walsh said she discovered Sweet Peas through a CDH support group.
Sweet Peas was started by Corin Nava of East Haven, Stephanie Olivarez of Indiana and Kate Crawford of Pennsylvania. Nava said by e-mail that the three mothers started Sweet Peas in July 2009 after meeting through an Internet group.
Nava said they came together for comfort and support and decided they wanted to help families that had experienced what they had gone through. Both Nava and Crawford lost babies to CDH; Olivarez's baby also had CDH, but after numerous surgeries, she has thus far survived three years.
"We all have experienced what it is like to stand by and watch our children struggle for life in the (neonatal intensive care unit)," Nava wrote. "That is an experience that no matter whether your child lives or dies, you never forget. You feel helpless, lost and confused. After talking about our experiences and speaking with other parents we saw a need that we could fill. We decided we wanted to provide those families with little things that could help comfort them and get them through a difficult time."
Thus far, Sweet Peas has helped establish 15 local projects across the country, delivering a total of more than 1,000 care packages to various hospitals. Sweet Peas recently won a $25,000 Pepsi Refresh Grant, which was divided among the 15 projects.
Walsh, who works as a medical assistant at the UConn Health Center, said she used her $1,500 share to purchase items for 50 care packages for John Dempsey Hospital. Each package contained photo frames and photo albums, baby hats and booties, blankets, toiletries, journals, hand print kits, stuffed animals, hand sanitizer lotion, cameras and crossword puzzle books. She and other volunteers were to deliver the packages this week.
Nava said she, Olivarez and Crawford never expected Sweet Peas, now an incorporated nonprofit organization, to take off like it has. Their goal is to reach out to as many as families as possible.
"We have received some great feedback from parents, nurses, social workers, etc." Nava wrote in an e-mail. "As people become aware of the services we provide, we are receiving more and more requests from hospitals and families for assistance, and we work hard to fill every request we can. It would be amazing if we could get Project Sweet Pea bags into every major hospital (neonatal intensive care unit)."