A Miracle called Lisa

A team of doctors at Thames Valley Children's Center have been a part of the life of Lisa since she was still protected lovingly inside of me. At that time, I was afraid for her to be born. The answers to her medical mysteries would come to life the minute she took her first breath. And even with all of the ultrasounds, the mounds of information about Spina Bifida and Hydrocephalus, and the weekly reports from the doctors, there was still a small part of me that clung onto a thread of hope that everyone was wrong. The swelling of the ventricles in her brain could have been misread on the ultrasound screen, as well as the lesion on her back where the spine had failed to close around the spinal cord.

The miracle of a medical misdiagnosis was not in our plan, however. Lisa was born on a cold winter night, surrounded by a medical staff prepared to welcome her, nurture her, and do whatever was necessary to heal her. With that last bit of hope that I had hung onto, now evidently gone, I vowed that I would do everything in my power to give Lisa the life that she deserved. The optimism of the medical team was contagious, and it was difficult not to share their enthusiasm for my beautiful baby. I have a picture of Lisa sleeping peacefully in her hospital isolette, her back wrapped in protective gauze, a full head of black hair and her chubby cheek resting softly on the blanket. Her one arm is bent at the elbow, her tiny fist laying by her mouth. But it is not the image of the sleeping baby that makes me love this picture so much. Looking closely at her curled up hand, she has one finger laying out straight on the blanket...yes "the middle finger". Even as a baby, she was ready to take on the world. She was ready to prove that she would be a fighter.

The twelve years following the birth of Lisa have been a mix of typical baby and little girl experiences, and spina bifida/hydrocephalus learning and enduring experiences. In the first year alone, there were four surgeries and weeks of hospital stays that added up to months. The medical language of hospitals and doctors became a fluent part of my vocabulary. Rounds of therapy and clinic visits became a part of ordinary life for our family. As she grew and her world expanded beyond her home and into school, my job as advocate and educator of the new people in her life became a primary focus. I wanted Lisa to achieve all that was possible for her; I didn't want her to ever settle for anything less than what she was capable of. There have been some setbacks over the years, as she had to undergo two more surgeries when she was seven. There were complications resulting in a loss of memory, a loss of previously gained capabilities. But, as with anything new in anyone's life, we adapt. We make changes to accommodate our shortcomings, and enhance our strengths.

As Lisa enters the pre-teen phase of her life, my worries as a mother have shifted from the physical concerns that she has to deal with, to the social and emotional drama that comes with most young teenagers, but are intensified when there is a disability that accompanies the changes of puberty. Because of the nerve damage to her spinal cord, Lisa has no bowel or bladder control. She is not able to feel any sensation of emptying either one. She wears a diaper. She catheterizes herself five times a day to ensure that her bladder is empty, and to prevent infections. Asking her to go to the washroom and try to eliminate is like asking a person in a wheelchair to get up and walk. Surprisingly, this has not been an emotional issue for Lisa yet. Her washroom routine is accepted as normal for her, and she will openly discuss it with anyone who asks. I, however, am dreading the day (which I know is coming soon), when she will fully comprehend her differences, when she will hate the diaper.

This past Tuesday, Lisa had an appointment at the Children's Hospital to have a renal ultrasound performed which shows the bladder and the kidneys. Following the test, she had an appointment with her urologist who, in the past, usually discusses the results of the test, asks questions about her general health, and then sends us home with a follow up appointment for next year. I had no idea that this year's appointment would be different. I had no idea that this year's appointment would allow Lisa to dream the possibility of living a diaper-free normal life. For the past year, Lisa has been taking a daily dose of medicine that helps to control the leakage of urine from her bladder in between her catheterization times. Taken regularly, it works miraculously well. If her only concern was her bladder, she would already be able to throw out the diapers. The biggest stumbling block, however, has always been her bowels. Unpleasant a topic as it is, this is a daily concern for Lisa. It is not something that she can ever be modest about.

After reviewing the dosage of her bladder medication, and asking for Lisa's input about how she thought it was working, the doctor then turned to me and very calmly stated that we needed to focus on achieving bowel continence, in other words, no more messy accidents. I looked at him in disbelief, at first thinking that I had misunderstood him. He went on to explain that Lisa was a candidate for a procedure that has been performed quite regularly on people with bowel dysfunction. Especially considering that she would soon be a teenager, he thought the timing was right to at least think about the benefits for her. As he continued to explain the procedure- known as MACE- my mind was racing with questions and concerns. I was afraid to believe that this hope even existed. Simply explained, Lisa's appendix would be used as a natural tubing that then becomes surgically implanted at the top of the colon creating a valve. There would be a small opening on her abdomen that would give her access to the "appendix tube". She would then insert a catheter containing an enema solution into the opening. This would effectively clean out her bowels. She would have to repeat this process every 3-5 days, but would have little to no soiling in between. I am still trying to comprehend the enormous difference that such an unbelievable surgery would have on Lisa's life. Once again my perfectionism has kicked into overdrive and I am searching for all kinds of information about MACE- both negative and positive outcomes. Surgery always means some risks. Not every person with bowel dysfunction benefits. Is it painful? Is there risk of infection? I want to see pictures. I want to talk to other parents. How could that doctor look so calm when he literally changed my daughter's life with his simple suggestion?

Throughout the whole discussion, Lisa sat on the table, eyes growing wider with each vivid description of the surgery. I snapped back into the presence of the moment when I saw the fear growing in her. I knew what kind of an impact a successful MACE surgery would have on her life, but I needed to remember that she was growing up. She needed to become an active participant in her health care, and what she wanted to do with her body. The doctor must have sensed Lisa's unease as well, because he turned to her and simply asked her "Wouldn't you like it if you didn't have to wear diapers anymore?" She smiled and nodded her head. That few seconds that the doctor took to include Lisa, to remember that she was more than just another surgery, reassured me and made me very grateful to him for his humanness.

We are at the very beginning stages of this next journey in Lisa's life, with many questions, more research, and clinic visits to look forward to. But, the miracle of the possibility for her is worth every second of this journey. Lisa looked at me with a big smile on her face when we were driving home on Tuesday. She spoke one sentence that would mean nothing to me coming from my other two kids, but is something that I never thought she would ever say to me. "Mom, I have to buy some new underwear."