What is more critical to the quality of life than a healthy body? What if surgery is required to save a life? This story is about my experiences and the emotionally complex process of making informed medical decisions.
Parenting a healthy, well-rounded child is tough enough, but making medical decisions for a child with a high-level physical disability and incurable disease is a gigantic adult responsibility that I had no experience with.
The most important things I learned about living with the fear of the medical unknown were how to make informed decisions and how and when to include my son Hayes in the decision-making process.
The Foundation Of Informed Decisions
Organized Home Medical File Or Binder
One of the most essential steps to making informed decisions is keeping an organized medical record file at home.
Beginning with Hayes’ birth, I created a medical file that contained documentation from his baby and annual child well-care checks, immunizations, illnesses, appointments with specialists, and hospitalizations.
During the long diagnostic process, I requested copies of the specialists’ reports for his at-home file. Previous posts linked below include some of those reports because I felt the information might help another family.
The information in his medical file also helped our family tremendously when Hayes had to qualify for special education services in the public school system.
The Right Questions
The constant questions I asked myself when trying to make decisions regarding Hayes’ medical maintenance were:
- What are all the questions I need answers to? I wrote them down and took the list with me to the appointments.
- What local parent groups or organizations can I contact for information and support? For your information, I got the best information from other parents in similar circumstances.
- How can I independently research a doctor’s or surgeon’s skill and expertise?
- What are the positive outcomes of the recommended medical procedure or medication?
- What are the risks and possible consequences of the procedure or medication?
- Who would you recommend for a second opinion?
- What was my gut telling me when I met and talked with the medical specialist and observed their interaction with Hayes?
- What medical option has the most significant outcome for improving my son’s quality of life?
Team Of Medical Specialists
For 11 years, our family worked with a team of medical specialists, including his pediatrician, nurses, neurologists, pediatric orthopedic surgeons, lung specialists, cardiologists, ophthalmologists, and physical and occupational therapists.
I had unwavering trust and faith in Hayes’ pediatrician, who guided us throughout his life.
It is critical to value and feel comfortable with the doctor in the lead of your child’s healthcare and survival.
My idea of a doctor who “got it” treated us as equal partners in the decision-making process. They spoke directly to Hayes when appropriate and discussed all the options in easy-to-understand language. They listened to our concerns and asked if we had any additional questions before leaving the examination room.
Equal to credentials, they had a sense of humor and were still passionate about helping individuals and their family members to make informed decisions.
My Two Favorite Medical Stories
Most of Hayes’ life was an endless progression of long, agonizing waits (usually three to four hours each time) in hospital waiting rooms with other kids and their families who also did not want to be there.
Some of those appointments also provided lasting positive memories. Below are two of them:
- I think I mentioned before that Hayes was a jokester. During one of his every six-month appointments with the MDA (Muscular Dystrophy Association), I remember his neurologist entering the examination room carrying a beautiful, hand-tooled doctor bag.
She pulled out a “hammer” from the mysterious bag. It was used to check the reflexes in both of his legs.
While chatting Hayes up, she sharply struck his left knee, but Hayes’ right leg jerked forward and back. Then she struck his right knee, but his left leg did the forward and back thing.
His twinkling blue eyes and impish grin would give him away, and he would start laughing, followed by the specialist, Pete, and me. Thank God the muscular dystrophy did not damage Hayes’ fun or will to live genes.
2. While driving to the MDA Clinic at Carrie Tingley Hospital for another appointment, I noticed a bunch of Black Suits on the roof. I thought that visual was most unusual, but we checked in and waited our turn to see the neurologist.
While waiting, a hospital staff member approached us and asked if we wanted to meet Vice President Al Gore. She explained that he had visited Carrie Tingley Hospital unannounced, which is why all the Black Suits were on the grounds. Of course, we said yes and were escorted to where he was in the hospital.
What an unexpected thrill and honor to meet him! Only a compassionate person would take time out of a hectic schedule to visit the only hospital in New Mexico that specializes in caring for children with chronic conditions and in treating complex musculoskeletal and orthopedic conditions, developmental issues, and long-term physical disabilities.
Of course, Vice President Gore had to compete with Hayes’ Gameboy, and he graciously asked Hayes if he would like him to autograph it. Our son quickly nodded yes.
VP Gore was kind to us and asked Hayes about being in the Boy Scouts (he had his uniform shirt on that day). Then he shook Hayes’ hand, smiled at us, and told our son he was glad to meet him.
Invisible Stalking Beast
I thought of the progression of muscular dystrophy as being like a stealthy mountain lion that quietly advances day by day in the shadows of my family’s once safe, healthy existence.
Everyone feels its presence. The fear of attack is constant. It is the progressive weakening of every muscle in my only child’s body. There is no shelter. Unless a miracle happens and a cure is found, my precious son will be its prey on the day I least expect it.
One week before Christmas, when Hayes was eight years old, he collapsed when we were leaving our house to mail our stash of Christmas cards. It felt as if a wild beast came out from nowhere, knocked him down, and was determined to keep him down to the end.
Hayes tried to stand up but couldn’t. At that moment, I knew the diagnosis would be Duchenne Muscular Dystrophy, not Becker, which is a longer life expectancy.
“Mama, will I ever be able to walk again?”
When I picked my son up, those were the words I hoped I could answer truthfully without taking away his hope.
As my heart was barely beating, fully understanding yet another huge loss of ability for Hayes, I held his hands and said, “Son, none of us know what God’s plan is for our lives from day to day. The best we can do is work and pray for a cure so you can walk again. We must be hopeful, trusting, and grateful for our time together.”
Then we hugged each other. I lifted him into my Mustang convertible, and off we went to mail our Christmas cards. Hayes was brave, and in the most lasting ways, he outsmarted his cunning stalker.
But every time my son asked me that question, a mass of sorrow stuck in my throat. I prayed that the right words would come to me and comfort Hayes. I think that’s where the trust part comes in.
As his mom, I thought it best to be truthful when answering Hayes’ questions without diminishing his hopes and dreams for the future.
Experimental Procedures
When parents are desperate to help their child, oftentimes, the risks involved with experimental procedures are the final frontier of hope for their loved one.
Pete and I were told all treatments for muscular dystrophy were experimental. It is an incurable disease. I never had good vibes about that word. For me, “experimental” dredged up Frankenstein Unplugged kind of results.
However, each family must weigh the benefits and risks of any experimental options for their loved one based on the individual’s unique situation. We followed our gut instincts and declined all experimental treatment for Hayes.
To be truthful, our gut instincts turned out to be correct. The results of the experimental drug therapy that Hayes did not participate in eventually showed the drug’s side effects caused more harm to the participant’s overall health instead of improving muscle wasting and weakness.
Before making a decision that would have significant consequences for Hayes, I talked with him to find out how he felt and what was on his mind.
What Works
No one else knows or loves your child like you do. If your child’s life is not being immediately threatened, I encourage you to take the time you need to make an informed medical decision that you will feel confident about.
If you remain calm, comforting, and hopeful, chances are high your child will follow your lead.
We figured out how to make peace with the many medical appointments that were part of Hayes’ life. They were required to monitor and manage Hayes’ general health and maintain his gross and fine motor skills for as long as possible.
Equally important was that Hayes had a chance to be a kid, enjoy his life, and explore his strong personal interests and abilities.
Since all Fullers loved good food, we let Hayes pick a place to have dinner after the long waits in specialist offices or the hospital. It gave us something to look forward to, and Hayes loved eating out at restaurants.
We tried not to dwell on the worst part of Hayes having Duchenne Muscular Dystrophy that was yet to come-knowing that without a cure, spinal fusion surgery would be necessary. That would be the hardest informed medical decision we would ever have to make.
Scoliosis (curvature of the spine) is when the spine curves sideways and can become unstable. That is the time it becomes necessary to have the spinal fusion surgery.
My God. My son, who was such a good person, would run out of time and options. My frantic prayer was, “Please, God, let there be a cure for Hayes and all the other people in the world whose lives are so difficult because of neuromuscular disease.”
None of us could bear the thought of such a massive surgery. What if something goes wrong?
Please click on any of these links for five other previously published stories about this topic Diagnosis And Death Certificate, Muscular Dystrophy Association, Four Year Diagnostic Process, Sorrow Management, and Lessons Of Incurable Diseases.
Resources
One of the best resources for any medical condition is the Mayo Clinic https://www.mayoclinic.com
To check a doctor’s credentials, begin with the Federation of State Medical Boards https://www.fsmb.org. When that page opens, click on http://docinfo.org at the top right and enter the information requested.
To check on whether a doctor is Board Certified, the website is https://www.certificationmatters.org
Exceptional Parent is an award-winning publication serving the special needs community. https://epmagazine.com
Search Medical History Binder on Pinterest for helpful ideas at http://pinterest.com
Tough Cookie Tip: The keywords of this survival story are making informed medical decisions. I outlined the process above, and everyone can learn this important skill. Make it a priority to search for the most current information about the life condition impacting your loved one or yourself. Online searches and some specialists even have a YouTube channel where they share free information that can be time-saving and extremely valuable.
Copyright © 2022-2025 Marilyn K Fuller. All Rights Reserved.
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I remember you telling me that whole ordeal you went thru to get the best care for Hayes. I hope this blog reaches alot of people who need this guidence and help.