I’ve spent many posts talking about the hurt that church has caused in my life, and maybe I haven’t been as good about sharing some of the good things.
In an earlier blog post, I wrote about some of the health issues that impacted my life as a child. I didn’t spend a lot of time on the specifics. There was so much spilling out of me back then that needed to come out, and I didn’t have the capacity to see many of the good things that church had brought to my life because of the hurt I was feeling. I’m not downplaying any of the bad things by speaking of the good stuff, but I’ve learned that when you’re in the midst of pain and hurt, it’s hard to focus on the good. I think that’s understandable.
Here I am now on blog post number ninety. That’s a lot of posts, a lot of pain, and a lot of remembering…
Today as I write, I find myself thinking back to a story that I can only believe was a miracle. It’s one that still gives me chill bumps and makes me tear up to this day.
Let’s go way back to 1983. I was five years old.
I was standing in my grandmother’s kitchen. For some reason, that day, she was looking at my neck and asked my mom to come over. She noticed that one of my collarbones stuck out significantly more than the other one. Naturally, this concerned my mom and grandmother, so my mom took me to the doctor.
The family doctor didn’t think it was anything to be concerned about. Still, he sent me to an orthopedic doctor just to be safe.
The orthopedic doctor diagnosed me with mild Scoliosis, which ironically had nothing to do with the protruding collar bone. The collarbone issue was nothing to worry about. Some people, he said, just have one side that sticks out more than the other one. But thankfully, it had been noticed because if it hadn’t been, I might not have gone to the doctor, and then they would have missed the scoliosis.
I began to visit this orthopedic doctor once a year to keep up with the progression of my scoliosis.
Even though I was very young when this all happened, I can still clearly see the waiting room of that office. I remember the x-ray room and the doctor very well. This yearly orthopedic appointment became a part of my life for the next five years.
We would go in, get an X-ray and compare those to previous years. The doctor said it was something we should keep an eye on but didn’t feel like it was anything to worry about.
When we went for that regularly scheduled visit in early 1988, this visit went from being routine to things changing very quickly. I began telling this doctor that my feet would tingle or fall asleep when I sat down for even short periods. I thought this was normal. But the doctor had a much more worried look on his face for the first time. I don’t know what he saw in that year’s x-ray that looked different. I didn’t understand why something that had been routine became urgent, but that day changed things for whatever reason.
The doctor told my mom that something about my case didn’t seem right. He felt like there was more than just Scoliosis, and he wanted me to see a more specialized doctor. He felt like my case was beyond his level of expertise.
I walked into the Orthopedic clinic at Arkansas Children’s Hospital in 1988 with what we thought was a mild but possibly unusual case of Scoliosis.
We were wrong.
I was just a kid, and I continually thought that I was making a big deal out of tingling feet when maybe it wasn’t a big deal at all.
I was afraid that these doctors might laugh at me.
The first doctor we saw at the hospital was a world-renowned Orthopedic spinal surgeon. Arkansas Children’s Hospital is a teaching hospital, so my first visit was interesting. The room was filled with doctors, residents, and students. This was new and very different from my previous doctor’s visits.
The doctor placed my new X-rays on the light board.
He explained that my case wasn’t just a mild form of scoliosis. In fact, he thought that it was a mild/moderate form of spina bifida, and scoliosis was the side effect of that. Then, he began to point out vertebrae that weren’t formed correctly, some that were missing large sections, and he could see fluid pockets and other bone malformations. Then, he started asking me about bowel and bladder function. The tingling feet were a big clue that something was changing inside me. Suddenly they were concerned about my heart, kidneys, brain, sight, and hearing…
This visit began what I like to refer to as my tour of Arkansas Children’s Hospital.
Over the next few months, I would see what felt like every specialist in that hospital. I had tests run on what seemed like every part of my body.
Some of these tests were extremely embarrassing for a 10-year-old little girl. Bowel and bladder tests can be almost dehumanizing. To be asked to pee on a table while laying under an x-ray machine while doctors and nurses stand by and watch or have a bowel movement in front of a doctor while being hooked up to machines with probes inserted into areas that probes don’t belong… well, it’s not something you ever forget.
One of the last clinics we visited was the Neurosurgery clinic. I admit that I had never heard of neurosurgery or neurosurgeons before that visit. It isn’t something a 10-year-old thinks about.
But this clinic would end up being the one where time stood still.
These doctors sent me to have an MRI, which in 1988 was pretty new technology. We were told there was only one in the state, and it was in Little Rock.
I had no idea what an MRI was, but I was soon to find out. I remember walking in that day to a room with a long tube. It was overwhelming. I was tiny, and this machine was massive.
I was afraid of the machine, but my parents were more fearful of the results. What was this machine going to find inside of me?
My dad wasn’t allowed to stay in the room with me. Because he was a farmer and frequently used a welder, they feared that if he had metal somewhere in his eye, the colossal magnet inside the machine might pull it out and blind him.
That scared me. A machine so powerful that my dad couldn’t sit in the room for fear of being blinded, but they wanted to put me inside?
They did allow my mom to stay. They gave her an X-ray apron, and she sat with me. I can’t believe they let her do that, and it shows me just how much times have changed.
They told me I had to lay perfectly still. I had to hold my breath when they told me and breathe when they told me. I laid in that MRI machine for hours. It was terrifying. The noises the machine was making, the fear of what it would find, and just the sheer exhaustion from laying perfectly still for so long made the whole experience something that left its mark on me.
This machine was nothing like the new modern MRIs. Things took longer. They kept redoing scans and going back over areas of interest.
My parents will tell you that they could tell by the looks on the technician’s faces that something was wrong, though they weren’t allowed to tell them what it was.
We saw the neurosurgeon soon after the MRI. This time the room was filled entirely with doctors and residents. There was barely room for me and my parents.
The neurosurgeon began to explain that I did indeed have Spina Bifida. Spina Bifida was commonly known to paralyze those who had it. Many patients never walked, and many had catheters and ostomy bags. The side effects were individual to each patient but were almost always severe.
My case wasn’t as severe as this. Still, my spine presented most of the symptoms that coincided with a spina bifida diagnosis. It was something they said I had been born with, and it was a miracle that I ever walked.
Many patients with spina bifida have portions of their spines growing on the outside of their body, which allows doctors to diagnose their condition very early in life.
My spine was covered, but a section wasn’t covered with bone like most people’s. That section of my spine was only covered by a layer of fat and skin, but no bone. This was significant. Any injury to that area could cause me to be paralyzed.
My spinal cord was tethered, or stuck, to my tailbone. In addition, I had a large fluid pocket called a pseudomeningocele at the base of my spine that was causing intense pressure on my cord and other issues that needed to be remedied.
There was also the issue of my progressing scoliosis that would need to be addressed, but that would take a backseat to the new findings.
None of those things were what had caused this sea of doctors to fill my room.
What the doctors were about to tell me was something close to a phenomenon and something most of them had never seen.
The pressing issue was a two-inch bone growing through my spinal cord. I later learned that this condition is called Diastematomyelia and affects less than 5% of people with congenital spinal deformities. My case was rare.
If this bone wasn’t removed, it would most definitely paralyze me as I continued to grow. I was only ten years old, and any upward growth would continue to rip my spinal cord. I was lucky to be walking, but I would undoubtedly be paralyzed if they didn’t do surgery immediately. This wasn’t something that could wait. It was something that needed to be done as soon as possible.
Then things got even more serious.
The surgery itself could cause paralyzation. There was considerable risk in removing something inside the spinal cord. But, to leave it and do nothing meant certain paralyzation.
There wasn’t a good choice, only a necessary choice.
My only symptoms were my tinging feet, and in my 10-year-old mind, that wasn’t a big deal. But to these doctors, it meant that damage to my spinal cord was already being done.
Things began to move rapidly. We scheduled the surgery. We visited a company that made customized wheelchairs for paralyzed children. I was measured and fitted. If the surgery paralyzed me, they would move forward in making my wheelchair.
In April of 1988, I walked into Arkansas Children’s Hospital as a young, confused, and scared 10-year-old little girl.
The doctors visited with me the night before as I sat in a hospital room for the very first time in my life. They walked me through the surgery and the recovery. There were so many unknowns. I was scared. My parents were scared.
The microscopic surgery lasted 8 hours. I lost two units of blood and had to have a double blood transfusion.
They removed the bone, untethered my spinal cord, and repaired the fluid pocket. It was an extensive surgery.
I woke up in the recovery room with a needle sticking out of my neck, measuring my blood loss, and an incision covering my entire back. I was in intense pain and throwing up, which made the pain even worse. I remember asking for my mom.
My mom will tell you she was unprepared for what she saw. The needle in my neck and swelling was a lot for a parent to witness.
When I woke up enough to remember where I was and why I was there, I immediately began searching over my body to see if I could feel my extremities. I would think about my finger, see if I could feel that, then my arms, and so on. Finally, I got to my legs, and they felt heavy. I could feel them, but it didn’t feel the same. I was terrified.
The doctor visited me in the recovery room to see how I was progressing. At this point, he had no idea whether I was paralyzed or not. They had been so deep in my spinal cord they had chipped out this bone piece by piece. They had worked around nerves and untangled things. The surgery had been intense, and the outcome was unknown.
I remember my mom standing beside the bed when the doctor came in. He pulled the sheet up and revealed my legs. They were wrapped tightly in ace bandages to help with circulation during the surgery. He removed the bandage section near my feet and pulled a giant safety pin out of his lab coat pocket. He took the end of the safety pin and pushed it into my foot. I felt it. He moved higher up my leg with the safety pin, pushing it into my skin again. I felt it. As he removed the bandages, I felt the weight from my legs disappear. I began to move my feet and my legs. The doctor looked at my mom and said, “The baby is going to be ok.”
My mom cried.
Throughout this whole ordeal, we had become close to this doctor. In many ways, my case was a doctor’s dream and a nightmare simultaneously. My condition was so rare that many doctors had never seen one, and even fewer had operated on a patient so it intrigued them. As a result, my doctor was emotionally invested in my case and in me personally as his patient, and this moment was huge for him.
The surgery was a success. I was going to walk. The wheelchair wasn’t needed.
They did damage a nerve in my left leg that left me with constant pain that I have to this day; still, it was a small price to pay to be able to walk.
I walked out of the hospital.
It was a miracle.
But ten days later, my daddy carried me into the emergency room. Things had taken a turn for the worse. My daddy will tell you that my little body was limp. Something was wrong.
I had spiked an incredibly high fever that nothing would bring down. The doctors feared infection.
They immediately began to run tests, and one of the first things they did was a spinal tap. This was something I had never experienced, and it was one of the most painful things I had ever endured. The headache that followed was incredible.
They admitted me to the hospital to run further tests. Meanwhile, my condition began to deteriorate. My body was giving up on me.
Something was indeed wrong, very wrong.
I lost count of how many spinal taps I had. I remember laying in the hospital bed with the head of the bed lowered to help the headaches and relieve the pounding pressure I felt in my head. I remember the dark rooms and the crying out for pain medicine.
I remember the endless rounds of antibiotics running through my veins, burning the IV site every 8-12 hours. I remember the constant IV changes and blood draws. I remember thinking that I was going to die.
They placed me in isolation. No one could enter my room without wearing protective gowns, masks, and gloves.
My situation was dire.
One of the last tests they ran was a nuclear medicine scan. The doctor filled me with radioactive material one night and ran the tests the next morning.
We finally had answers.
The surgeons wrapped my tender spinal cord with a material called Cylastic. This was to allow the spinal cord to heal and give it some much-needed strength in the area of the bone removal.
My body was rejecting this material.
The only way to fix it was to continue the antibiotics and hope they worked or remove the material from my body.
But they couldn’t wait much longer. So the most obvious choice was to go back in and remove the material. Still, the doctors were unsure if I would survive the surgery because I was so weak. And they were also concerned about what damage could be done to my spine if they did this.
The doctors agreed to wait until after the weekend to make the decision.
Saturday… high fever, antibiotics… no change
Sunday morning… high fever, antibiotics… no change
Sunday at noon… fever breaks.
The doctors didn’t change their plan of treatment… nothing changed, but for the first time, my fever broke.
There was hope.
That afternoon, a group of people from our church came to visit me. My dad met them in the hall. They asked how I was doing. My dad told them I was actually doing much better, and my fever had broken. It was a miracle, he told them.
They asked when my fever broke, and my daddy told them it broke right around noon, and they smiled.
That day, Sunday morning, at the little country church down the road from my house, the church was closing its service in prayer.
Before they did, however, one of the men in the church, whom I loved very much, said…
“I know this isn’t something we normally do, but instead of just having a dismissal prayer today, can we all go to the altar and pray for a miracle? Can we pray for Whitney today?”
And so, they did.
At noon…
These wonderful people who loved me met at the altar and, one by one, prayed for me.
And as they were praying there, unbeknownst to them, my daddy was also praying in the hospital chapel, asking God for a miracle.
And at noon, my fever broke.
And a few days later… I walked out of the hospital.
I will always believe that God worked a miracle that day.
His timing was perfect.
My church community loved me and prayed for me. They walked with me as a small child through my hurt. They loved me and showed me what faith looks like.
It is something I will never forget.
Until Next Time,
Whitney