A Happy Birthday For Jaxon!

ACBDD Help Me Grow

October 31, 2016

By: Becky Werling

Jaxon, Spina Bifida
Jaxon and his dad, Jared

Meet Jaxon H., a sweet and happy little boy who just turned two on October 22!  The youngest of three beautiful children, he brings joy to everyone he meets with his adorable face and big smile. Jaxon has Spina Bifida, but this developmental disability in no way defines him or slows him down.  He’s very mobile and fast at getting where he wants to go, which is everywhere!  According to his parents, Jared and Rachel, Jaxon’s personality is going to take him very far in life.  Jared and Rachel have been through a great deal; however, they feel more blessed through the struggle, and recognize and appreciate the everyday miracles they once took for granted.  

When Rachel was pregnant with Jaxon, her doctor ordered a 3D ultrasound in Toledo.  She wasn’t worried at the time and looked forward to a day out of town with her husband.   Jared, however, was worried – especially when he noticed the techs spending a lot of time looking at the baby’s back.  

After the ultrasound was complete, they were asked to step into a room.  There, they learned their baby had Spina Bifida.  Jared and Rachel recognized this diagnosis but didn’t understand what it meant.  They were quite in shock when it was explained: Spina Bifida means “split spine” and it occurs in the womb, when a baby’s spinal column doesn’t close all the way.  It’s the most common, permanently disabling birth defect in the United States.  Every day, about 8 babies are born with Spina Bifida or similar brain and spine conditions.  

From this point forward, things moved quickly.  They found out Rachel could have tests to see if the baby was a candidate for fetal pre-birth surgery. During this surgery, doctors repair the baby’s spine while still in the mother’s womb.  Pre-birth surgery gives children a greater chance of being able to walk and lessens the severity of the disability. But it also carries a huge risk for premature birth. The surgery happens around 25 weeks, and many babies are born the same day. Surgery can be performed after the baby is born, but longer time in the womb can lead to more damage.  

Jaxon’s parents had a small window of time to make their decision, with many hoops to jump through.  It felt like they were running a race with no known path.  The doctors weren’t able to answer their questions with definitive answers, because each case is so different.  At this point, life got hard – really hard. Jared and Rachel mourned the loss of what they knew to be typical, the dreams of a healthy baby boy leading an active life. They made the difficult decision to have pre-birth surgery, and it was performed on August 13 in Cincinnati (the closest hospital specializing in the surgery). Due to the risks involved, mothers are asked to stay close to the hospital. Luckily, Rachel’s sister lived only 15 miles away.   

On August 27, Rachel’s water broke at 2 a.m.  They rushed to the hospital, where Rachel learned that if she delivered, the baby could also be dealing with Cerebral Palsy.  After pre-birth surgery, the goal is to keep babies in the womb for 36 weeks, but when the water breaks, the goal is 34 weeks.  Most babies don’t reach that goal.  Rachel said she felt a sense of peace during this time and she wasn’t scared.  “As soon as you come to terms with all of it, a new wave hits you.  But God teaches us to swim.”

After this, Rachel was admitted to the hospital for the rest of her pregnancy.  She made friends with the nurses and staff and they became a little family.  She spent her time crocheting and even set up a little shop where she took orders for staff, friends and family.  Her sister kept her supplied with yarn and her family visited on the weekends.  Her two little girls stayed at home most of the time with Jared, Rachel’s mom and her grandmother.  

Jaxon, spina bifida
Top: Jaxon’s baby rolls
Bottom: Jaxon and his sisters

Jaxon was born on October 22, at 34 weeks and 3 days!  He weighed 6 lbs., 3 oz. and had rolls in his arms and legs.  At one point, Jared was in the hospital elevator and heard nurses talking about the cute, healthy “SB” baby in the NICU, the one with all the rolls. Jared said “That’s my son!”  After his birth, Rachel moved to the Ronald McDonald House while Jaxon stayed in the NICU for two months, coming home right before Christmas.  

Today, Jaxon has a shunt, which helps direct spinal fluid and assists with absorption.  He’s had two revision surgeries for his shunt, but these issues should slow down after his second year.  Jaxon also had surgery to remove scar tissue and close up the “baby lump” on his back.  He had to lie on his stomach for two weeks, but he was such a trooper.  The scar tissue surgery has increased his mobility, and he can walk with support and pull himself up. He has incredible upper body strength and crawls everywhere.  He does have balance issues, but he’s working on those in physical therapy.  He wears braces with his shoes to strengthen his ankles, and he’s getting a reverse walker soon, too.

Jaxon's back, after having his "baby lump" removed.
Jaxon’s back, after having his “baby lump” removed.

Jared and Rachel are so very happy with Jaxon’s team: his Physical Therapist, Kathy Hoelscher, his Help Me Grow Service Coordinator, Traci Miller, and his pediatrician, Beth Bish.  Kathy is a tremendous help, not only with the physical aspect, but with connecting them to  resources.  Traci Miller helps every six months with Jaxon’s goals and services. And Beth is always eager to learn more about Jaxon and what’s going on with him. Kathy and Traci also introduced Jared and Rachel to the Children’s Developmental Center (CDC).  Jaxon is thriving at the CDC, talking, counting and loving his classmates.  They also get Family Support Services through the ACBDD. This includes respite care, adaptive equipment and assistance with travel expenses.   Rachel says they wouldn’t know what to do without these services.   

Jaxon’s situation has opened doors for Rachel to talk to people about disabilities and help other families who are going through the same struggles.  “This experience grew my faith and helped me see how much I rely on God, and how much easier life is when God is in your life.”  Rachel’s favorite Bible verse, which she likes to share with others, is Isaiah 26:3 “You will keep in perfect peace him whose mind is steadfast, because he trusts in you.”