He was only just brought into this world and he is already facing what could be the toughest battle of his life. Noah’s crusade is to live with Spina Bifida.
NBCRightNow.com – He was only just brought into this world and he is already facing what could be the toughest battle of his life. Noah’s crusade is to live with Spina Bifida.
Babies in our area are being born with neural tube birth defects at an alarming rate. That has prompted the health department to hold two public forums this week. The case of Alica Jones and her newborn son Noah is the most recent.
Just ask Jones who lives in Prosser, it is any parent's nightmare. She has been waiting those 9 long months, finding out her child may never walk on its own and fighting through a vigorous first few days of life all the while hoping that her child will be strong enough just to survive. She created Noah’s Crusade, a Facebook page that highlights the story of Noah and his family’s journey to bring him here. It is her way of coping and connecting.
Spina Bifida is a neural tube defect where the spinal cord does not fully form and part of the spinal cord is exposed and damaged. In his case it is likely Noah will never walk on his own or even use much of his lower body.
Jones gave birth to Noah last week by C-section at Seattle Children’s Hospital. One of the first toys handed to him was a stuffed giraffe. Watching him see the colorful animal for the first time was a moment mommy would not miss for the world. Those first moments were cut short. Within his first day of life, Noah had to jump one of the biggest hurdles he may ever face with a surgery to fix his spinal cord.
"He should be off the ventilator within an hour or so, and so that's what I was expecting," said Jones.
Jones knew every step before the surgery. When Noah could not breathe on his own this weekend after the corrective procedure to his spine, she knew something was not right.
"He wasn't even responsive. You would talk to him and he wasn't even crying at all. He wasn't even opening his eyes."
When we spoke with Jones over the course of the week. She explained that she did not know what to do with herself. The mix of emotions and wanting to care for her child that she could barely even touch through the tubes and hospital monitors had her feeling helpless.
"You don't realize how much you take all that stuff for granted. When your baby is laying there and you can't do that kind of stuff. Just to change that diaper or just feed him that bottle."
Saturday night was the nightmare, but Sunday on Mother's Day was the greatest gift of all. The family woke up to a sound, a cry from a stronger Noah, a baby that could breathe on his own and finally touch skin to skin with mom.
"It's like the best sound ever. Buy me a million dollar present and it would never compare to the way yesterday was. It was just awesome."
Now that he is here, Jones says her new job is not just being a mother, but it is being an advocate for Spina Bifida awareness. This is just the first fight. Jones explained as she fought through tears that God is guiding her and Noah on this crusade.
"Just never give up because you have God right there just to push you through. He will never, never give up on you and he's… he's a good god."
Noah is just the youngest case. In the past few years our region has seen dozens of similar families fighting through these birth defects. According to the panel that spoke Tuesday in Sunnyside their research shows that the rate of cases in Benton, Franklin and Yakima Counties is four times the national average.
NBC Right Now is attending the local public forums, speaking with experts from Seattle Children’s Hospital, meeting people in our community faced with these health complications and we will continue to report these stories as health officials try to narrow in on factors that could be causing these defects. The second part of Noah’s story will air Wednesday at 6 p.m. on our station.