Hope Continues for Parents

9 years 7 months 1 week ago April 29, 2007 Apr 29, 2007 Sunday, April 29 2007 Sunday, April 29, 2007 9:22:58 PM CDT in News

Still, there are a lot of couples who struggle to get over the initial obstacle of delivering a healthy baby into this world.

This week's Your Health with Angie Bailey takes a look at birth defects, and a Jefferson City couple that's been through the worst, but still offers hope to others.

It's a sobering fact that one in 33 babies are born with a birth defect in the U.S.  In more than 2/3 of those cases, the cause is unknown.

Gabe and Becky Hulsey knew becoming parents would be a life-altering event, but they didn't expect their first experience to only last a little more than an hour.

"We got pregnant, were excited, and went through the first 21 weeks normal. I didn't even have any morning sickness," said Becky, "It was just a wonderful pregnancy. We went in for our routine ultrasound and everything stopped then and there. My husband asked if the baby was okay and the doctor said 'No.'"

In a matter of about 20 minutes, everything changed for the Hulseys.

"He told us our baby had anencephaly. It's a neurological birth defect and there was no chance of survival outside of the womb," said Becky.

No longer chiefly concerned if they would have a son or a daughter, reality immediately forced them to accept their baby wouldn't grow up, wouldn't walk, talk and laugh with them, wouldn't live but a few moments, if at all.

"There's nothing you can do to prepare for it, just sit down and talk about it. You have two choices, either get busy living or get busy dying," said Gabe, "So that's what we decided to do was get busy living."

It took a while for them to get to that point in thinking when it came to their daughter, who they named Hope.

"I said this is going to be a long death march. Becky said it's going to be a long goodbye," Gabe said.

"There was nothing to get ready for, no nursery to get ready," said Becky. "Obviously I was pregnant, I had the growing belly, I had to shop for maternity clothes. Most of it was we just had to pretend like we weren't pregnant."

Becky was already taking the recommended 400 microgram of folic acid, but her body doesn't process it well. So now she takes mega doses in preparation of their next pregnancy.  In most cases, 400 micrograms a day of folic acid is instrumental in preventing neural tube defects, which are malformations of the spine and brain.  The most common of these defects is spina bifida, and the most severe cases are like Hope's.

Hope Luebbering Hulsey lived 79 minutes after she was born. Gabe and Becky got to hold her until she passed away.

"If we could help one couple, one family, we'll probably never know about it. But help one couple avoid what Becktoria and I have been through, then that's just fine, we've completed our task," said Gabe.

"Getting people to know they'll be aware that they need to take folic acid not just when they find out their pregnant, but well in advance of even thinking of becoming pregnant too," Becky said.

Folic acid does not have a known toxic level. In other words, you can't get too much. Besides taking supplements, good sources include fortified breakfast cereals, beans, green leafy vegetables and orange juice.

Last week at the March of Dimes Walk, Team Hope Luebbering Hulsey raised  $35,000 and the Jefferson City walk raised a total of more than $134,000.

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