Tethered Spinal Cord: My Hero

Tethered Spinal Cord: My Hero
It was the end of January. It was my first trip out of town alone since my C-section. A sudden blizzard came up. I drove home with the wind whipping the car, visibility about 3 feet, sobbing, with Brenden screaming in the car seat because I was so upset. The doctor had told me my son had spina...
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Brenden was born on December 16, 1991 with a large strawberry birthmark on the base of his spine.  The back of his left leg was deep purple and his left foot was turned in with a high arch.  The local doctors told me he had cosmetic problems; that a plastic surgeon could “fix” him. 

They were wrong.

My son was 6 weeks old when I insisted on a second opinion for a diaper rash that would not quit.  A pediatrician 90 miles away immediately pinpointed a yeast infection and also insisted on X-rays.  It was the end of January.  It was my first trip out of town alone since my C-section.  A sudden blizzard came up.  I drove home with the wind whipping the car, visibility about 3 feet, sobbing, with Brenden screaming in the car seat because I was so upset.  The doctor had told me my son had spina bifida.  I had never heard of it.  He sat me down and explained that my baby would never walk, would have no control of his bowel or bladder, and would have learning disabilities.  My life changed in an instant.

Brenden actually has Tethered Cord Syndrome, a set of neurological symptoms caused by irritation of the spinal cord or associated nerves.  He had a fatty tumor the size of his fist tangled in with the nerves and muscles at the end of his spinal column, tethering, or holding his spinal cord down.  It caused nerve damage to his left leg and foot, bowel and bladder.  He was untethered at 22 months in Denver after second and third opinions and many painful and invasive test in 3 different states.  The operation took 7 hours.  He woke up from the anesthesia and had a near fatal asthma attack.  We left the hospital 3 days after his surgery.

The operation was on Monday.  We drove 8 hours home on Thursday.  About 5 PM on Friday I finally found a local doctor who would look at my feverish, crying child who had fluid seeping from the 7 inch incision on his back.  He said my baby was fine.  I begged him to call our doctor in Denver and describe the symptoms.  I thank God that he did.

Our Denver doctor called me at 6 PM.  He said that Brenden had an infection of his spinal fluid, called spinal meningitis.  He said that I needed to get him to Denver immediately.   I told him that we could drive up on Saturday, after my husband was done administering an ACT test.  He told me that my baby could be dead by then.  He said I needed to get to Denver by midnight.

My husband was at a football game, with the car, cheering the team on to victory.  My other son was four and scared.  Brenden was crying continuously.  I didn’t have time for either of them.  I called a neighbor to come and watch the boys.  I called commercial flights.  I secured a seat on a flight leaving at 10:30.  We wouldn’t get to the hospital until after midnight.  I packed suitcases for me and my baby.  I paced my house restlessly, listening to my children sob, wishing I had never given up smoking.  I thought and thought.  I had to get to Denver before midnight.

I called a manager I knew of at the local Pepsi bottling plant.  He said that he would love to help, except the private jet was being disassembled for routine maintenance.  I thanked him and hung up.  I called three other people I knew that flew private planes.  Their answering machines announced that they were at the football game.  The phone rang.  The Pepsi jet was being reassembled for us and would leave at 9 PM.

My neighbor offered to take us to the airport.  My husband drove up as we were getting in the car.  The football team was losing badly; he left after the half-time band performance.  He took us to the airport.

I had no money for a taxi to the hospital.  I had remembered the diaper bag and two suitcases.  I had forgotten my purse.  The airplane pilot paid the taxi driver.  I never knew his name.  I believe in the kindness of strangers.

The clerk at the admissions desk paged our doctor.  He took my fretful, hot baby and aspirated fluid from his spinal column and hooked him up to two IV antibiotics and codeine for the pain.  I could only listen as my child screamed.  I was frantic after a week of this.

A minister came to visit us, at the request of a friend.  He prayed with me and gave me the sacrament.  He anointed Brenden with Holy oil.  Brenden didn’t have to have any more fluid drained from his spine after that.  I believe in miracles.

Since then, Brenden  has had a collagen injection when he was three to try to keep him continent.  It was a very painful failure.  He had his leg broken and reset to straighten his foot when he was four.  He has had invasive urological examinations many time.  He had another operation in second grade to to keep him continent. He  retethered and had another operation to free his spinal cord. He has since had several additional operations to lengthen his leg and straighten his foot.  We are thankful for skilled neurosurgeons and Internet support groups.

Brenden walks unaided and runs slowly.  He ski's, swims, and rides bikes.  He is smart and funny and loving and giving.  He has faced more adversity in his few years than most people do in a lifetime.  He turned seventeen in December and he is my hero.

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