The Miller Press | Original Link Not Available
Vicki L. Prentice
Miller, South Dakota— “Your child has a birth defect and will most likely be disabled.” Not exactly the news Zach and Emily Weber were expecting to hear during the routine ultrasound, conducted in the 19th week of Emily’s pregnancy. The doctor, who had been unusually quiet during the ultrasound, simply stated the baby had a condition called “myelomeningocele.” He turned to leave, and then, almost as if an afterthought, informed them that the baby was a boy.
“We were heartbroken,” said Emily. “I wanted to call my mom and tell her we were having a boy, but I couldn’t stop crying and had to hand the phone to Zach.”
In shock, Zach and Emily left the clinic without waiting for the information the doctor said he would give them. Later, they read on the Internet that the more common name for myelomeningocele is spina bifida. Though they learned that their baby’s backbone and spinal canal would not close before birth, they were left to wonder how severe it would be for their baby.
A month later, Emily had her first appointment with a specialist in Sioux Falls. Zach and Emily were relieved to find out that the spina bifida was limited to the lower portion of the spine. “The doctor told us that if you’ve got to have spina bifida, this is the kind you want,” said Emily. He went on to explain to them that the higher up the spine the opening is the more likely there would be paralysis.
Through the course of Emily’s pregnancy, she continued to see the specialist in Sioux Falls, who would deliver the baby by caesarean section. On July 5, 2011, Jonah Jacob Weber entered the world.
“He was born on a Tuesday, and on Thursday he had his first surgery to put the spinal cord inside his back where it is supposed to be,” explained Zach. Five days later they put a shunt into the back of Jonah’s head to keep fluid from building up in his brain.
Jonah spent the entire 10 days he was in the hospital in the neonatal intensive care unit.
Once home, other than watching out for the incision and the shunt, and extra doctors’ appointments, life was pretty much the same for Emily and Zach as it is with most new parents. They did have to head back to Sioux Falls when Jonah was about three weeks old for a surgery to adjust Jonah’s shunt. In October, Jonah had casts put on his legs to help straighten out his feet and ankles to help him stand on his own and walk in the future.
According to reports received from the physical and developmental therapists who come once a week to work with Jonah, the smiley seven-month-old is meeting all their goals for him. Emily and Zach are thrilled that developmentally, Jonah is average, and in some cases, above average compared to other babies his age with spina bifida. “He sat up by himself at six months,” said Emily. “The other day he surprised me by standing up against the couch to play with toys.”
The future prognosis seems good for little Jonah, though only time will tell exactly how he will be affected long-term. There’s no doubt having a child with spina bifida has given this young couple a lot to handle and there are times when they wonder, “Why us? Why our baby?” But they are both quick to say they wouldn’t trade Jonah and all they’ve gone through for anything in the world. And that is because to them, SB = Special Blessing NOT Spina Bifida!
Little Jonah Weber will be participating in the 2012 Walk n Roll Mall Walk February 4 in Sioux Falls. If you would like to assist the Weber’s in reaching their goal, you may donate by mail to Emily Weber, 455 Wessington St. So., Wessington, SD 57381 or in person at one of three Wessington businesses–R&B Food Center, The Sunset Bar, or Heartland State Bank, where jars with Jonah’s picture are ready to receive your donation.