The red herring
Story of love and survival in mom’s own words
Thursday, December 21, 2006
To help other kids
Rebecca’s Steppers will take part in the 10th annual Kohl’s Step Up for Kids at the 80-floor Aon Center, Sunday, Jan. 28, to benefit K.I.D.S.S. for Kids, which helps support the Family Services programs at Children’s Memorial Hospital. For information, www.childrensmemorial.org/stepup/sponsors/participantList.asp
Each time I see the scar across the top of my daughter’s head I am reminded of what I’m most grateful for. To me, her ear-to-ear scar symbolizes all of the lessons I painfully learned during the summer of 2004.
Before then, I lived as a cynic who quietly questioned the validity of prayer, scoffed under my breath at stories of miracles and never gave angels a second thought.
Our precious little girl came into this world with a tiny cleft lip, wide set eyes and a divot in her spine.
At 4 weeks old, an MRI ruled out spina bifida. At 4 months old, her cleft lip was repaired. At 6 months old, one of her eyes began to wander and she developed a strange faint line down the middle of her nose no one could explain. But because she met developmental milestones on time, all of her doctors told us to enjoy our gorgeous little girl and not to worry.
She had two more surgeries to place, and then replace, ear tubes. At 3, she had eye surgery to correct her weak eye muscles. Then at 4, she began to complain about her feet falling asleep.
My mother’s instinct began to yell loudly. Something was just "not right."
The shocking news
After a pediatric neurosurgeon ordered a spine and brain MRI, nothing could have prepared me for what I was about to hear.
As my husband and I stared at the images of our little girl’s brain, the neurosurgeon told us she had the rarest form of a neural tube defect, a basal encephalocele. Simply, very early in her fetal development, her skull did not fully close, allowing her brain to slip through the gap and outside her skull.
The doctor handed me a tissue. The news got worse. Our daughter’s pituitary gland, hypothalamus, optic chiasm and optic nerves were all "involved" in this defect. The doctor pinpointed on the MRI images exactly how our daughter’s optic nerves and other brain tissue had been re-routed. The MRI also revealed dysgenesis of the corpus callosum, a rare congenital abnormality of the structure of her brain.
We sat in silence. Then I heard my husband’s voice say, "Can you fix this?"
The carefree summer that I had planned quickly evolved into one filled with too many trips to the hospital, too many brain MRIs and CT scans, way too much anesthesia and not enough trips to the pool.
At first I spent the days wearing a perfect poker face, trying to keep myself together for my children. But when they went to bed, I sat on the cold bathroom floor and let the tears flow. I mourned the loss of an ordinary childhood for my sweet little girl, I cried for her future and what she was about to endure. I cried because I felt sorry for myself and my family.
Then came anger. Our daughter had been seen by countless doctors at reputable children’s hospitals and not one of them had caught the defect. The anger was short-lived as I began to accept the fact that this was my daughter’s life, her path, and I was here to help her through it. So, I mustered up the strength and got up off the bathroom floor.
But just when I thought it couldn’t get any worse, another scan revealed that our daughter’s brain had "sprung a leak." For as far back as I could recall, our daughter had a runny nose for a few hours every morning. Her pediatrician at the time explained the chronic morning drip as either allergies or colds. The CT scan that summer told a very different story—the fluid was cerebral spinal fluid.
Brain surgery was her only option—and it was not going to be easy.
The news spread rapidly and our circle of support grew infinitely wider. Phone calls and e-mails poured in. The prayers were limitless as I learned of entire houses of worship praying for our family. Regardless of religion, their messages were all the same: Have faith, trust in a higher power and believe.
This soon became my mantra.
The sense of smell
Until that summer, I never thought much about the sense of smell.
At one of many pre-surgery meetings, our daughter’s neurosurgeon rattled off the long list of the risks associated with her upcoming brain surgery. She started with the generic ones, then moved on to the more serious, beginning with a host of visual disturbances or blindness, a 50/50 chance of pituitary gland damage, various neurological damage, and finally, an almost 100 percent certainty of a permanent loss of her sense of smell.
Other than a few sighs, the car ride home that day was dreadfully quiet.
I was haunted daily by the possible outcomes. I had nightmares of my daughter screaming "mommy, I can’t see anything" and feared that she would have a host of pituitary problems requiring constant monitoring and daily medications. I envisioned our family spending months at the children’s hospital, her having no memory or other neurological problems, and of course, every other horrible possible combination of it all. But worst of all, I feared her death. The thought of her living without her sense of smell never even entered my thoughts. I classified the possible loss of smell as "no big deal." It surprised me to discover that no one else agreed.
My husband was quite disturbed by the prospect. Later my dearest friends, in unison, agreed with my husband’s viewpoint. To me it all sounded a bit absurd. How could anyone think about the practically useless sense of smell while all the other possible horrific surgical outcomes hung over our heads? Then one day while at the beach breathing in all my favorite smells I began to actually consider what her life would be like without the sense of smell.
Finally, five months after her diagnosis, in what seemed like an eternity, our daughter’s operation day arrived. After 13 long hours of meticulous brain surgery, the neurosurgeon emerged with the news we waited months to hear.
Our daughter had survived.
But once inside her head, doctors discovered the encephalocele was bigger than anticipated. We could see the exhaustion in the doctor’s face as she explained how she lifted the brain tissue off of the roof of our daughter’s mouth and out of her nose. She described the reinforcement bone they built to protect her brain that would forever remain outside of her skull. She sealed the spinal fluid leak with special glue.
Then last, she told how she delicately maneuvered through the sea of olfactory nerves without having to cut any of them, adding more than two hours to the operation, just to save her sense of smell.
Only time would tell. Later, as I replayed her post-surgical report in my head, it occurred to me that maybe, just maybe, the sense of smell was worth saving after all.
The next three days were filled with worry and fear as we waited for our daughter to wake up. She was on a ventilator, her face was completely swollen and her eyes were only slits. She had IV lines in every limb, a catheter, a bandage on her head, a central IV line and an arterial IV line in her neck. While I had prepared myself for how she would look, it was still horrifying.
Gradually the good news began to roll in. Each day brought better reports and bigger smiles from her doctors. She managed to shock us all once again with her speedy recovery. Just short of two weeks later, in what was the ultimate gift to me, our 5-year-old daughter left the hospital intact, but without her sense of smell.
At home, she complained that food tasted funny and had no real appetite but soon adjusted. After only a few weeks it seemed she didn’t care that much about her inability to smell. I, on the other hand, became obsessed with it. Every few days, I would shove some pungent item under her nose and ask her if she could smell it. For months, her reply was always the same, "No, mommy, I can’t smell it."
As the months passed, my attempts to assess her smelling ability began to annoy her. Then one day, about five months after her operation, when I put a bottle of nail polish remover under her nose and asked her "the question," she surprised me. "Yes, mom, it smells nice." At first I was confused. Nice? Nail polish remover? But then it hit me. She said yes! She could smell! We both shrieked with joy and headed straight into the kitchen to try to find other things to smell. She would be able to smell cookies baking, fires, flowers, stinky diapers and dead skunks!
We never found out why our daughter’s feet fall asleep. We smile now when they fall asleep and understand that her little sleeping feet were the red herring that ultimately saved her life.
Due to the rarity of our daughter’s diagnosis we live with many unanswerable questions. I’ve gotten used to doctors saying, "I don’t know."
Developmental issues may still arise. It’s a harsh reality, but it’s what I call our "new normal." Only the future knows the answers to these questions. I, however, live in the present appreciating each precious moment.
Without a doubt, it was the most challenging year of my life. Strange as it sounds, though, I am forever grateful to my now 7-year-old daughter. Through her, I learned so much about fear, acceptance, trust and the power of prayer. I now have faith in the human body’s power to heal and faith in a higher power. I feel blessed to be this special little girl’s mother.
Because of my daughter, I get the chance to live my life fully aware that the course I’m on can change in just one moment.
This is an excerpt of a personal essay that will be featured this summer in the upcoming anthology Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child, edited by Arlene Schusteff (Wyatt-MacKenzie, June 2007).
Michele Ackerman, of Mundelein, is co-author of Someone Who Cares: A Guide to Hiring an In-Home Caregiver. She is a contributing author to two books on home health care. She can be reached at firstname.lastname@example.org.