Thriving with Spina Bifida: Jaxon’s Testimony

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Meet Jared and Rachel Huffman, parents of three amazing kids. Their two oldest amazing kiddos, Gemma and Lydia, were your normal, run-of-the-mill pregnancies. Their third is a strong little boy named Jaxon who has spina bifida, a condition where the spinal cord grows on the outside of the body. They met with us recently to share Jaxon’s story of uncertainty, healing, and God’s power.

Receiving the Spina Bifida Diagnosis

When they found out they were pregnant, joy turned to excitement as the Huffmans were hoping for a boy. The gender ultrasound revealed that their hopes would come to fruition! After settling in with the news, they received a phone call about a week later asking them to return to the hospital for a more detailed ultrasound.

The results of this ultrasound confirmed the doctor’s suspicions that Jaxon had spina bifida. Doctors presented the possibility of abortion to Jared and Rachel, but they wanted no part of that. They also discussed the option to operate on Jaxon’s back to repair it in the womb. It was difficult to qualify for and carried a risk of early delivery — many women will have their babies the same week of their operations.

However, the longer the spine is outside the body the greater the damage to the child’s spine. In Jaxon’s case, it was around L2 & L3 — as a result, there was a greater concern for long-term damage to his spine. If the repair was completed after birth, it would greatly impair everything below his hips.

The cut-off point for the in-womb surgery is 25 weeks and 6 days. In the end, God opened doors and made sure everything worked out so that Rachel could have the surgery before the cut-off date.

Living in Cincinnati

Before the surgery, there is a “talk you out of it meeting” with the doctors. The hospital did not sugar coat the risks in any way, but God gave the Huffmans peace that this was the right thing to do. They had the surgery in Cincinnati.

Doctors made an incision in Rachel to expose only the necessary part of Jaxon’s back. They repaired the spine, and then placed a patch over the wound. All went well, but doctors required Rachel to stay near the Cincinnati hospital. Fortunately, her sister lived nearby.

Shortly thereafter, Rachel began to leak amniotic fluid.

God’s Hand Upon Jaxon

Rachel was concerned that her water had burst. This happened during Week 28, which raised the possibility of cerebral palsy and lung issues if Jaxon were to be born then. As it turned out, Rachel only had a minor leak and the fluid level maintained a healthy level for the remainder of Rachel’s pregnancy. While she was readmitted to the hospital, it gave her time to connect with the nurses.

Happy Birthday Jaxon

At 34 weeks, Jaxon would make his appearance via a scheduled c-section. A c-section was the preferred method of delivery because a natural birth could undo the repair to Jaxon’s spine.

While a preemie, Jaxon was born weighing 6.5 pounds! He was the only premie in that NICU wing with rolls! He needed help with eating and breathing, a normal problem with premature births. However, this was the only thing really keeping him in the NICU.

God’s hand was upon Rachel: the day she was discharged from the hospital, a room opened up at the Ronald McDonald house across the street. Ironically, while a blessing this also became a moment of trust for Rachel. After Jaxon was born, there were no more “definite dates” to look forward to.

With a scheduled c-section, they had a target delivery date. Now, Rachel found herself facing the unknown. Would Jaxon recover quickly? Would this be a long stay? Other parents in the RMH had been living there for years.

The Holidays

This time gave Rachel a lot of perspective. Many of the kids in the NICU wing had life-threatening conditions, but there really wasn’t anything like that wrong with Jaxon. It helped to bring Rachel out of an emotional slump and helped her to see that God had them the whole time.

This time also gave Rachel time to learn how to take care of Jaxon’s wound from the pediatric nurses. During his stay, the hospital moved Jaxon out of the NICU and into a private room which gave them some emotional relief. As she later realized, God was weaving a tapestry of miracles that He was turning into a beautiful picture of Jaxon’s life.

Rachel spent Thanksgiving living in Cincinnati at the Ronald McDonald house. She recalled how she prayed to God to allow them to be home for Christmas.

He answered her prayers. After two months of living away, around the middle of December Rachel brought Jaxon home to join his sisters!

Additional Surgeries

Many kids with spina bifida will require a brain shunt. Doctors saw on Jaxon’s brain imaging that he would as well to help regulate the flow of the spinal fluid from the brain to spine. Two months after getting home, Jaxon returned to the hospital for brain surgery.

While initially a scary prospect, the neurosurgeon who operated on Jaxon reassured the Huffmans that he performs this procedure multiple times each and every day. It encouraged them that this was one more way that God had His hand on Jaxon.

Surgery went well, although there was a second procedure to unclog the shunt. A year to the date later, Jaxon had a revision surgery on the brain shunt. During this operation, plastic surgeons removed the initial patch from the earlier repair to his spine. The scar tissue was tethering to the spine and restricting movement.

Recovery was stressful, and Jaxon was required to stay on his belly for several weeks. Since he had nothing else to do, Jaxon learned to talk during this time — and hasn’t stopped talking yet! To this day, he talks extremely well for his age.

Jaxon Today

Currently, Jaxon has a fluid pocket on his spine. This, too, is a common spina bifida problem. Doctors are monitoring it, but the most recent imaging results indicate its size doesn’t require surgery.

During this time, doctors also had him repeat a manual muscle test. This analyzes his movement and compares it to his baseline.

Jaxon rocked the test!

The doctor was incredibly impressed by the way Jaxon is able to move in ways he shouldn’t be able to! The doctor also said he’s moving so well that he may eventually be able to walk with just one hand crutch or cane. Potentially, he may not need anything at all!

Surrounded by Love

The Huffmans attend Union Chapel in Lima and describe their church as one full of prayer warriors. They’ve utilized Facebook to keep them and others in the loop on Jaxon. Each time he has an appointment or scare, they update the prayer chain — and the church responds in loving prayer.

Spina bifida doesn’t define Jaxon. God has been faithful in helping him grow, heal, and overcome. God continues to show Jared and Rachel that He has some really big plans for Jaxon. He’s allowing a three-year-old to reach an entirely different crowd of people than he would typically.

After all, most kids his age don’t use a walker or leg braces. But Jaxon’s love and happiness is contagious: he’ll say hi to just about anyone, always asking them about their car or truck. In fact, that is one of Jaxon’s favorite things: cars and trucks. He can brighten anyone’s day and is the embodiment of sunshine.

He has almost an overabundance of life: God has blessed Jaxon in other ways that make up for any physical challenges he may face.

Growing in Faith

This process has been challenging for Jared and Rachel. When they first learned of Jaxon’s spina bifida, there was a grieving process — a realization of all of the things Jaxon wouldn’t be able to do. Her first two pregnancies were pretty typical. Emotionally, there are things to still let go of.

However, God continues to be faithful. Doctors gave Jared and Rachel a dire outlook for Jaxon’s mobility. Instead, through His power, Jaxon has blown the door off of all of those predictions.

This entire spina bifida process has helped them to be better parents. But also, it has brought them closer to their Heavenly Father. It has helped them to realize to be less dependent on their own power and more on His. God knows how each one of us grows, and knew that in order to understand Him better, this was how they would grow as a couple, as a family, and as His children.

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