Local families with children born with a rare birth defect thought they were part of an active investigation to find a cause. They just found out they're not.
NBCRightNow.com - Local families with children born with a rare birth defect thought they were part of an active investigation to find a cause. They just found out they're not.
A recent study shows the rate of anencephaly, a neural tube defect, is four times the national average in our region. The numbers for another neural tube defect, Spina Bifida are not as high.
Both defects were discussed at public forums held by the Department of Health just a few months ago in Sunnyside and Kennewick. The difference is according to the Washington Department of Health is that only one is currently worth investigating.
"It's terrifying. It's a whole list of 'we don’t' know.' Is he going to walk? Can he move his legs? Can he go to the bathroom on his own? As much as I would love to just have I guess a quote unquote ‘normal child,’ he's as normal as he can be and we'll cross the bridges later on," said Nikki Shelton. Her son Corbin was born just months ago with Spina Bifida. She didn’t know he’d have a defect until he was born.
The current research being conducted by an advisory committee that includes members of the DOH is to sample Washington parents and interview them to possibly find a common factor. In anencephaly cases they're mostly fatal. Babies are born without parts of their brain. With Spina Bifida there's more hope.
When we asked Shelton and Alicia Jones, whose son Noah has the same defect, if they were under the assumption the Department of Health was including them under their research they both said, “Yes”.
“To come to find out that they're heading onwards with anencephaly and not looking into Spina Bifida is disheartening," explained Shelton.
The WA Department of Health will continue what they call passive surveillance of Spina Bifida cases. They say no matter the defect it's tragic, but they have to focus their active sampling on the more alarming cases.
"It's a point of comparison. The thing that makes this unique is that under normal circumstances you'd see higher levels of Spina Bifida but in this case we're not," said Donn Moyer who is a spokesperson for the state Dept. of Health.
In Spina Bifida the baby is born with part of their spinal cord sticking out. While it's not always fatal, it's debilitating. As long as the cause of these defects isn't known the moms are going to do whatever they can to get their own answers.
"We're thinking if they can't do it, we'll do it."
Shelton and Jones have created the Facebook page “Washington Neural Tube Defects Cluster”. They're connecting with other moms and spreading the word that this could happen to anyone who lives in our area without much notice.
"While folic acid is extremely important, people need to be prepared to have something else happen and be prepared to fight for it. These little kiddos can't fight for themselves," said Shelton.
The Department of Health tells NBC Right Now that while Spina Bifida is not part of the current investigation, they will continue to at least track all birth defects in the state. The hope is that by combining research performed here with other cluster cases across the nation that researchers can further their studies and possibly find the cause of these defects.