Battling Spina Bifida: One Family’s Journey

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Spina bifida is a neural tube defect that occurs in one out of every 1,000 newborns in the United States.

By the time Don and Ellie Chambliss decided to have a third child, they were prepared. Pregnancy was never a smooth experience for the Evansville couple. “Ellie was born with a recessive gene that could create blood clotting issues,” explains Don Chambliss, “and she was also prone to premature labor.”

Pregnancy meant Ellie would have to take it easy—very easy. Having weathered through three miscarriages in the past, the couple knew what they’d be up against. “Once Ellie was pregnant, she’d have to come home from work and head to bed,” recalls Don. This could be a frustrating feat for the physical therapist and mother of two (the couple were already parents to two daughters under the age of 5). Ellie also had to receive two injections of blood thinner daily.

The pregnancy seemed to be progressing normally when Ellie entered her obstetrician’s office in Newberg, IN, one afternoon for a routine growth scan. During the ultrasound exam, however, the physician noticed a spot on the baby’s spine. “It was a spina bifida lesion,” recalls Don. “And that’s when our world changed.”

Initially, the couple was filled with fear. “It was really, really hard,” recalls Don.  But after taking three days to discuss the situation, the Chambliss’ decided to move forward and seek treatment for their baby. “My wife and I never once considered the alternative (to terminate the pregnancy),” Don says, “even though it had to be formally tabled by the doctor as an option.”

Spina bifida is a neural tube defect that occurs in one out of every 1,000 newborns in the United States. The condition, which results at birth, occurs when a baby’s backbone (spine) does not form normally. In spina bifida, a baby’s spinal cord and the nerves that branch out of it are often compromised. The condition generally happens at the end of the first month of pregnancy, when a baby's spine and spinal cord (a bundle of nerves that runs down the center of the spine) are developing. However, depending on the severity of the defect and where it is on the spine, symptoms can vary. Mild defects may cause few to no problems, while more severe defects can cause serious issues, like paralysis.

The Chambliss’ were referred to Riley Hospital for Children to create a care plan. “We spent the day in what was called a care conference,” recalls Don. “My wife and I walked into a room filled with various people from pediatric development, orthopedics, neurosurgery, physical therapy and social work. They all talked to us about what to expect with our baby and what would and could happen. It was incredible.”

In time, Don and Ellie learned that their child’s spina bifida lesion was low. “This was a good thing since the lower the lesion’s location on the spine, the more functionality a child could have,” says Don.

However, the condition’s outcomes can vary. Experts say treatment for spina bifida depends on its severity. Because it can involve many different body systems, like the nervous and skeletal systems, children may need support from a team of medical professionals.

Some children with an exposed opening on their back also need surgery to close it. The Chambliss’ son was one of these children. Dr. Andrew Jea, chief of pediatric neurosurgery at Riley was placed on the case. “At the time of the care conference, we discussed the closure of the baby’s spina bifida defect and the possible need to place a ventriculoperitoneal shunt for hydrocephalus,” he explains.

The doctor made quite an impression, says Don. “The first time my wife and I met Dr. Jea, we immediately felt more at ease,” Don recalls. “He was so kind, confident and reassuring. As a parent, you could quickly see the serious and significant investment he was going to make in our child.”

While the original plan was for the baby, Tiber Chambliss, to be born at Riley, he decided to come early. Tiber was born at a hospital in Newburg, Indiana at 7am and headed to Riley Hospital for Children via ambulance for his first corrective surgery hours later.

Tiber’s postoperative course was rocky, recalls Dr. Jea. “The baby developed a pseudomeningocele (buildup of spinal fluid underneath the skin) and a spinal fluid leak, so he had two additional surgeries to repair the spinal fluid leak and to place a shunt.”

Through it all, though, Riley’s care team was amazing, remembers Don. “The staff were all superb and Dr. Jea came to check on Tiber every day for two weeks.”

Eventually, little Tiber recovered and he is now doing well. “He is being followed by Riley’s multidisciplinary pediatric spina bifida clinic, explains Dr. Jea. “And when he becomes an adult, we will be able to continue to care for him in a team-based approach through our Adult Spina Bifida Clinic. There are currently very few medical centers that have this resource.”

Today, Tiber is a happy and curious 7 month old. “He’s been making such significant strides,” says his father. “We feel fortunate to be supported by such a talented care team.”

-- By Sarah Burns

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