Mother joins national effort to raise awareness of daughter’s birth defect
srichtersrichter
A little more than a year ago, Ava Helmick was born with the condition known as congenital diaphragmatic hernia. Her stomach, intestines, spleen and part of her liver were in her chest cavity.
Because her parents, Brian and Terri Helmick, learned early that Ava would have this condition, known as CDH, they sought out the best children’s hospital in the country so their daughter would have the best chance at life once she was born.
In August, Ava celebrated her first birthday. Other than being a trifle thin, she is exactly like all other babies her age — she’s smart, she’s quick and she’s determined — and early access teachers say she’s more developed than others her age. Ava’s cognitive levels are on par with most 18-month-olds.
Because of Terri’s experiences with the birth defect, she became a board member on the Breath of Hope Inc., which is based out of Commonwealth, Va. The group is a non-profit business dedicated to supporting families of those with CDH defects and to raising money to promote CDH awareness and encourage research efforts.
Together, women and men in the group decided to lobby for March 31 to be declared Congenital Diaphragmatic Hernia Day so babies with the birth defect have a chance at a better life. Like Terri, they have tackled their own states and now are turning attention to others.
Iowa’s Gov. Chet Culver recently signed a proclamation declaring March CDH month for the state.
Other states are signing on, Helmick said, though a few have refused. But that’s just another hurdle to cross for these parents and survivors of the condition.
“I am so excited it (the proclamation) went through,” Terri said one morning from her home, adding there isn’t a day that goes by she doesn’t think about Ava’s condition or her struggle for life.
“Several people have asked me why I don’t move on,” she said. “They say she’s normal and healthy.”
But Terri can’t let it go. She wants to give other CDH babies their best chance at life.
According to Breath of Hope Inc., congenital diaphragmatic hernia birth defects occur in one of every 2,000 live births in the United States. In comparison, cystic fibrosis occurs in one of every 3,000 live births and spina bifidia in one of every 1,478 live births.
The difference is that CDH often has fatal results, with as many as half the babies born with the defect dying.
Babies with CDH are typically born with most of their organs in their chest, meaning their heart and lungs often are undeveloped. The babies can survive this, but a number of complications can arise, stacking the odds against them.
In either case, CDH can be diagnosed with a routine ultrasound by about the 20th week of pregnancy, according to A Rainbow of Hope Web site. “The more severe the defect and the better the individual performing the ultrasound, the earlier the diagnosis can be made.”
However, many parents do not know their child has the defect until the baby is born.
And for those who have experience CDH in their families or who know someone who has, that isn’t soon enough.
“It is important to let people know this is out there,” Terri said.
Those who are aware can find better care and increase their baby’s chance at survival.
For the Helmicks, Ava’s diagnosis came when Terri was 20 weeks pregnant. Shortly after, doctors at University of Iowa Hospitals and Clinics gave Ava a 20 to 35 percent chance at survival.
When she was born at Children’s Hospital of Philadelphia, she was immediately put on a ventilator. At 14 days old, she had her first surgery. At 29 days old, she was taken off the ventilator, and at 40 days old, she developed her first infection. Yet despite all the previous odds, she survived and thrived.
She was discharged from the hospital 6 1/2 weeks after her birth.
Though CDH babies are fragile at first, nothing says that can’t live normal, healthy lives.
“They (CHOP) not only helped heal her, they made her normal,” Terri said about her daughter, later adding, “Some days I have to look at her scar to believe this all happened.”
In her first year, Ava was sick three times. The first occurred in March landing her in the hospital with a double-ear infection, a cough and pneumonia. In May, Ava had another ear infection, and in July, a third infection.
On Aug. 8, Ava got tubes put in her ears, and she has not had another ear infection since.
This winter, Terri will try and keep Ava inside away from germs so she can continue growing strong and healthy.
Ava’s doctors have told Terri and Brian Helmick her lungs are healthy, though the left one — the worst at birth — is still slightly larger than the right, which “took a beating” from being on 100 percent oxygen at birth. Her pulmonary hypertension is gone, and she is gaining weight, slowly but surely.
But just to be safe, the Helmicks will take Ava to CHOP this summer to have her re-evaluated.
Until then, Terri will continue trying to spread awareness about CDH.
On March 31, she would like to host a local walk, “Ava’a Awareness Walk,” for CDH support. Money raised will be donated to Breath of Hope Inc.
People across America will be encouraged to wear turquoise that day.
“It’s a simple and powerful way to raise awareness for the congenital diaphragmatic hernia birth defect,” Breath of Hope Inc.’s brochure states.
At least 18 states — Mississippi, Iowa, Virginia, Pennsylvania, Wisconsin, Nebraska, Maine, New Hampshire, Alabama, Georgia, Indiana, Michigan, Maryland, Tennessee, Connecticut, Missouri, Rhode Island and Ohio — will be celebrating in turquoise. And Terri and other Breath of Hope Inc. members hope other states will have joined in the support by then.
People are encouraged to send letters of support to their governors. Samples letters can be found on Breath of Hope Inc.’s Web site, www.breathofhopeinc.com.
Additional information and educational links also can be found at the Web site.
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