ElizaBeth Godwin-Kogelschatz didn’t get a good look at Rhema in the delivery room.
The newborn was lifted above the screen for the mother to see and “everything was normal for two more seconds.”
Then the surgeon saw the sac on the baby’s back.
“Stop!” he said.
The room froze.
“They wrapped her up,” ElizaBeth said. “They stuck her in my face and said ‘kiss your baby goodbye.’”
Rhema was rushed to another hospital across town. Within 48 hours she had surgery to close her back and put in a tube to drain excess cerebrospinal fluid from around her brain.
“That was the start of the roller coaster we’ve been on for two and a half years,” ElizaBeth said.
Rhema was diagnosed with myelomeningocele, the most severe form of spina bifida. It occurs when the spinal column does not close all the way. In myelomeningocele, parts of the spinal cord and nerves come through the open part of the spine, causing nerve damage and other disabilities.
She was also diagnosed with hydrocephalus, a build-up of cerebrospinal fluid around the brain that happens in 70 to 90 percent of myelomeningocele cases, and clubfoot, a birth defect that caused both feet to point down and turn in.
Despite ultrasounds and other prenatal screenings, the conditions were not identified before she was born on Aug. 9, 2010.
Rhema spent 40 days in the hospital’s neonatal intensive care unit in Knoxville, Tenn. When she was released, the surgical site on her back was still partially open.
ElizaBeth and her husband, Joshua Dean, were trained for wound care management. It was two more months before Rhema’s back ultimately sealed.
Controlling Rhema’s hydrocephalus was the biggest challenge that first year.
The tube, called a shunt, was supposed to drain the fluid from her head to her abdomen, where the body can remove it naturally, but it never functioned properly.
Shunts have valves that regulate the direction and amount of fluid that is drained. Rhema had her first shunt revision at 8 months old, but the shunt continued to malfunction.
The excess fluid bypassed the tube and created a sac of fluid on the side of her head and neck. Before she had the second revision she had a sac on her neck and another sac on her chest and throat.
“When we would take her out, people would stare or point at her and whisper,” ElizaBeth wrote in an article for Hydro Angels Over America, a nonprofit organization that serves people living with hydrocephalus.
“The endless staring and blunt inquiries by perfect strangers of ‘what’s wrong with your baby?’ was heart-breaking,” she wrote. “You see, my Rhema is beautiful and I wanted people to see HER, not her hydrocephalus.”
ElizaBeth and Joshua Dean wanted to have a good foundation as a couple before they committed to a child. They were married 10 years before they decided to have a baby, but a short time after ElizaBeth became pregnant Joshua Dean lost his corporate job.
The two ran a small business.
“That was able to sustain us,” she said, “and then Rhema came.”
Raising a special needs child means devoting time to medical care, appointments and therapies. Rhema took a lot of trips to the emergency room that first year. Time was measured moment to moment, event to event. ElizaBeth’s mother moved in to help, but the family faced an uphill battle and the business suffered.
“You can’t sustain when she’s in the NICU that long,” she said. “You lose customers. You lose deadlines. There’s no getting new business. There’s no way to make positive ground during that period of time.”
By the end of October 2011, Rhema’s medical and therapy bills had mounted and they lost their home.
“It was a very hard period of our life that we lost our home and most of what we owned,” she said. They sold as much as they could and ke pt what was left in a storage unit.
“We’ve learned to let go of things that are unimportant for things that are important,” she said.
Looking back, she said the gains have been far greater than any losses.
“We don’t hold on to any material thing tightly any more, because if it needs to go it needs to go,” she said.
Rhema is what matters now.
“It was a different life, it was a different heading,” ElizaBeth said, “and she changed our course.”
ElizaBeth’s parents in Dothan took them in.
“In so many ways, this was the best move we ever made,” she said. “My whole family is from here, my husband’s whole family is from here.”
Family members have been supportive beyond what she can describe. Rhema loves being surrounded by aunts, uncles, cousins and other members of her extended family.
“It’s a good season of her life to be around family, to have that support and people who don’t treat her any different for what she has to deal with,” she said.
ElizaBeth worked hard that first year in Tennessee building a team of medical people that she trusted and felt had Rhema’s best interests at heart. Now she had to do it all over again.
By the beginning of December 2011, Rhema’s health continued to deteriorate. While attending a local Christmas gathering sponsored by the Spina Bifida Association, they met their saving grace.
A neurosurgical nurse saw the massive swelling on Rhema’s neck and chest and called her neurosurgeon’s cell phone. Within 48 hours they were in his office, and three weeks before Christmas Rhema had a double surgery to remove the old shunt and put in a new shunt in a different region of her head.
This second shunt revision stabilized her hydrocephalus. Despite two shunt “sputters,” one of which required hospitalization, Rhema was finally on the road to recovery.
Relying on faith
Along the journey, ElizaBeth discovered she is not a Supermom. "But for Rhema, I will endeavor to be super," she said.
She relies on family, friends, medical people, therapists, organizations and others to help meet Rhema’s needs. Between the therapies, she works on finding funding, looking for grants, seeking information on medical advances and supporting mothers of other special needs children.
But she said she couldn’t do it without help from a higher power.
“I am a big person of faith and I love Jesus,” she said. “He’s going to give me wisdom, he’s going to give me strength. He’s going to renew my energy when I’m exhausted.”
She believes in educating herself, to take the information doctors, therapists and others give her and make choices that will level the playing field for Rhema as she grows older.
“At the same time, I also know that there is a higher wisdom, there’s a higher source that I can draw from that loves her far more than I do,” she said. “And H e, even above me, has her best interests at heart and knows her beginning to her end.”
She tries to make therapy and activities fun for Rhema. She isn’t under the delusion that she will never hear Rhema say “How come I can’t do that?” but she is working to make that question less likely.
“This is the reality of having a special needs child and doing it with excellence,” she said. “This is what’s best for her, and this is what is going to help her excel.”
ElizaBeth said she has learned to not look back at regrets, what-ifs or failures. She lives in the now, allowing herself to look at the past or the future only if she is reflecting on or planning the positives.
“When sadness and despair come knocking on the door of my heart, or when fear attempts to grip me and I can sense that I am about to cross that line from faith to fear, here is my combat strategy: I realize that I cannot do this,” she said. "When I realized THAT FACT, the self-imposed pressure to be 'super mom' fizzled. I am free of all the pressure, guilt and worry. Only with Jesus and by Jesus would I ever be what Rhema needs me to be."
In September, Rhema will undergo a derotational osteotomy, where surgeons will cut through the bones in both legs and reset them to turn them straight.
ElizaBeth said it’s not an undertaking for the faint of heart. Rhema has gone through so much already, and her family has suffered along with her.
There will be corrective surgeries for other issues when Rhema gets older. It’s all part of a plan to make her life the best that it can be.
Here and now
Rhema’s weekly schedule includes therapeutic dance and physical therapy in Panama City, aquatic therapy in Chipley and hippotherapy at LifeSavers Therapeutic Riding Center in Newville. The Dothan Civitan Club sponsors her for the riding therapy, and Rhema is also participating in Miracle League baseball on the Tot’s Team.
Seizing opportunities as they come is a responsibility ElizaBeth takes seriously.
“What we’re doing now is an investment in her future,” ElizaBeth said. Rhema is learning what she can do, and “cultivating those skills at an early age will give her so many more options when she is older.”
ElizaBeth’s undergraduate degree was in special education and she has worked in countless fields, including a children’s hospital in Mobile and a cancer ward for six months.
But it’s different when the child is yours.
“The difference is that you don’t go home after 5 or 3, it’s 24-7, and you’re responsible for that life and the success of that life and giving opportunity for them to be able to reach for the stars,” she said.
ElizaBeth doesn’t know if caring for Rhema made her a better mother, but she said it has definitely made her a better person.
“I think she and I have a very tight relationship because of the time we spend together,” she said. “I would like to think no matter what child I had I would excel to meet the needs of that child.”
She’s learned to celebrate little successes.
“I find with a child of special needs, it’s not so much the milestones as it is the inchstones,” she said.
Small gains add up to big ones. Rhema has already accomplished more than some well-meaning doctors thought she would.
ElizaBeth said being Rhema’s mother has changed her. Before her daughter was born she worked in church. She was a volunteer. She did women’s ministry.
A friend in Knoxville told her, “I keep waiting for you to return to the ElizaBeth I knew, and you haven’t yet.” She responded, “Is that a bad thing?” The friend replied, “No, I like this version of you.”
To find out more, visit: www.rhemamiracle.com and “The Rhema Miracle” community page on Facebook.