Baby Hannah Featured in Inquirer




Hannah's story was featured in yesterday's Philippine Daily Inquirer (see image above). I've copied the article from Inquirer.net http://showbizandstyle.inquirer.net/lifestyle/lifestyle/view/20080914-160549/Ordeal-of-a-child-with-a-congenital-breathing-defect.


Ordeal of a child with a congenital breathing defect


By Cathy S. Babao-Guballa
Philippine Daily Inquirer
First Posted 04:57:00 09/14/2008


MANILA, Philippines - There are stories that tug at your heart and remind you of your life’s journey.

Once upon a time, I was a mother with a child who was born with a congenital heart defect. Migi left this world to return to his true home 10 years ago, and that episode changed my life and our lives as a family forever. I remember how, when he was just a baby, I would hardly leave the room in the first three months of his life, anxious that the moment I left, he would stop breathing. All throughhis toddler years, we would make sure that someone was with him 24/7.

When I heard about Hannah Ysabelle Cordoviz and the efforts of her parents Carlo and Joan to help keep her alive, I knew I had to do something to help get their story out. Hannah was born on Aug. 14, 2007 with a very rare condition called Congenital Central Hypoventilation Syndrome (CCHS). It is a rare and lifetime condition characterized by one’s brain failing to signal the body to breathe. In Hannah’s case, her brain fails to do so when she falls asleep. To keep her breathing, her parents need to hook her to a mechanical ventilator/respirator, which connects to her through a tracheostomy tube found in an opening in her neck.

In the Philippines, there are only three known cases of CCHS, including Hannah’s. The eldest among them is a three-year-old girl.

The CCHS Family Network website says that the key to the CCHS patient’s longevity is informed medical supervision by medical professionals who also work to support the family in optimizing the home healthcare and school (or other) settings.

At a minimum, this requires nighttime nursing support in the home for the infant and child, with some respite support for the parents and caregivers. The US study cited found that the majority of CCHS families’ medical costs were covered by government and/or private insurance programs.

Unfortunately, in our country, congenital defects such as CCHS are not covered by healthcare insurance, so you can imagine the burden of the cost Hannah’s illness has placed on her parents. Joann told me that on the average, the family has to spend P150,000 a month to sustain Hannah’s care. This already includes monthly payments to the hospital where Hannah was confined for eight months—from September 2007 to May 2008. But what parent will not do everything to keep their child alive?

Ventilator

A huge chunk of the monthly expense comes from renting a ventilator which costs the couple P25,000 a month. “The money we have is money we already owe family, relatives and friends who have helped us since Hannah was born,” Joann and Carlo tell me. Both of them have had to quit their jobs to take care of Hannah who requires full-time care. There is a private nurse who relieves them and helps them out when they need to rest and her salary is factored into the cost.

“It is our dream to buy Hannah her own portable ventilator she can use for so many years ahead,” the couple says. “This portable ventilator will also allow us to bring Hannah outside the confines of our house: to the park maybe, to church, or even to a nearby fast food restaurant. It does pain us to know that we’re not able to have Hannah see the same sights, hear the same sounds, and experience the same things as other babies of her age do.”

Joann tells me that a portable ventilator is crucial to Hannah’s survival and it will cost them P750,000 to purchase one. With debts piling up month after month, the ventilator seems to be a pipe dream but the Cordoviz couple remains strong in their faith. “God provides and He has taken us this far,” Joann says.

To help in their fund-raising efforts, they have started a home business and built a web site called “Rosaries for Hannah”—
www.hannahysabelle.multiply.com

—Carlo and Joann make and sell lovely rosary bracelets as a means of raising funds to buy Hannah her much needed ventilator.
If you would like to learn more about Hannah, do visit their beautiful website. If your heart is moved to help out this couple, please call Joann at 0915-3111641 or e-mail her at jscordoviz@yahoo.com

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