Maui mother hopes her child's illness brings awareness through ' - Hawaii News Now - KGMB and KHNL

Maui mother hopes her child's illness brings awareness through 'Kulia's Bill'

Kulia at 6 months old Kulia at 6 months old
Kulia at 13 months old Kulia at 13 months old
A Maui mother is on a mission to raise awareness about a dangerous virus and to assure all newborns have a fighting chance at life.

Krystyn Aguinaldo-Iokia helped craft “Kulia's Bill” or House Bill 782.  It's aimed to educate pregnant women about the dangers and risks of cytomegalovirus (CMV).  The bill is named after her 18-month-old daughter.

When Krystyn was pregnant with Kulia, she tested positive for CMV.  But Krystyn says after Kulia was born, nothing was ever done.

"She looked really normal, everything was great, she was eating, she was fine, all of her vitals checked out.  Maybe about five months down the line, we started noticing something's really wrong with her," said Krystyn.

Krystyn says that's when Kulia started having seizures, stopped rolling around, and began crying uncontrollably.

At five months old, Krystyn requested a series of tests for Kulia. Test results came back positive for CMV. However, the virus had already attacked Kulia's body, brain, liver, and neurological system.

"Now she has cerebral palsy, she has epilepsy, she has severe brain damage…she doesn't roll over or sit up on her own, she needs 24-hour care and supervision, she's a handful but she's a blessing," Krystyn said.

The Centers for Disease Control and Prevention says approximately 1 in 150 children is born with congenital CMV infection (30,000 in the United States each year).  Up to 80-percent of adults in the U.S. are affected with CMV by 40 years of age, but the most dangerous time to get the virus is when a woman is pregnant.

The CDC says CMV is spread by close contact with a person who has the virus in his or her saliva, urine, or other body fluids. Washing hands often, not sharing food, drinks, or eating utensils with young children, and not kissing young children on the lips are a few ways one can avoid the virus.

"If somebody would have told me, don't share food and drink with your nieces and nephews, wash your hands after you change diapers, just things like that, you can reduce the chances by 50-percent of passing it to your unborn baby," said Krystyn.

Since Krystyn was tested positive for the virus when she was pregnant, she believes if Kulia was treated at birth, her effects wouldn't be so severe today.

"I think she would have had some effects from it, but I think she would have been a lot better off.  So I'm fighting for other families and babies," she said.

Maui Representative Justin Woodson introduced the bill last Wednesday.  The education portion of the bill moved through, however the mandatory testing part was struck down.

"It was disappointing because in my humble opinion, it's kind of the meat of the initiative. Awareness is of course crucially important.  However, we want to make that provision in the proposal," said Rep. Woodson.

The Hawaii State Department of Health says they support the intent of the bill, but they don't have enough funding for it.

Krystyn is just happy it's moving forward, to educate mothers and to fight for other babies.

"She's beautiful, she's perfect, she's great,” Krystyn said looking at Kulia.

“She's my drive to do this, for everyone else, because she can't be helped.  But I believe everyone else has a chance."

Utah already has a similar bill that requires its health department to teach CMV prevention and test newborns for CMV if they fail two hearing tests so their families can be educated on treatment options. Krystyn says a mother in Connecticut is trying to do the same thing for her daughter.

The second hearing for “Kulia's Bill” is Friday.
To read more about HB782, click here. A fundraising campaign for Kulia's medical bills has been set up at http://m.gofund.me/KuliaCMV. For more information, email krystynjames@gmail.com.

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