Research that Benefits Children and Families-Uplifting Stories

My uplifting story is a personal one and one that I began talking about in my discussion post. My son fell a little over 9 years ago. He was playing around with his brothers and hit his head on the basement floor. There was no knot or anything, after he stopped crying he said he was fine. They went back to playing and not even 2 hours later he starts projectile vomiting, so after talking to the pediatrician on-call we headed to the emergency room. It was a long night, they did a CT scan and observed him for awhile, concluded that he had a concussion and about six hours later we were on our way home.

About a week later I receive a phone call from a lady at Case Western Reserve asking if I would be interested in letting my son participate in a research study of post-concussive children and the effects concussions have on learning. After talking to my husband we agreed it would be harmless to my son but maybe help other children who have more serious head injuries, so I called the lady back and told her okay. it consisted of some questionnaires with different types of questions having to do with memory and other skills. Sorry this was so long ago I do not remember exactly what was in the packets. Along with this he had to have a MRI done at their expense. So he completed two of the questionnaire sessions and the MRI.

The MRI was done on a Saturday, the lady called me during the following week and said that she was sorry but that my son no longer qualified for the study and she strongly suggest that we see a neurologist. She continued to explain about the abnormality of the brain that the doctor had found and that it was in no way caused by the fall, that is was congenital. She advised me that she was sending me a formal letter with the findings and they would release the results to our pediatrician for further review. Of course as soon as I got off the phone I called the pediatrician in a slight panic. Only because my son had been having some medical problems would could not explain, like really bad headaches, his balance was slightly off, and he was having some urological problems.

My son was diagnosed with a Chiari Malformation Type 1. “This malformation occurs during fetal development and is characterized by downward displacement by more than four millimeters, of the cerebellar tonsils beneath the foramen magnum into the cervical spinal canal. This displacement may block the normal pulsations of CSF between the spinal canal and the intracranial space”(AANS, 2006). This is the mildest form of the five types and usually is asymptomatic. All the problems he was having, started to make sense and he was sent to see a neurosurgeon. Then January 27, 2004, my son went into surgery to remove some of the overlying bones and release of the thick membrane that the covers the brain and spinal cord. This was to release the build up of spinal fluid and allow the brain more room. There was so much that could go wrong but the overall benefits were well worth the risk. He went in at 7am, they even let me suit up and walk back to the operating room with him until they put him to sleep, that I think is when the seriousness of the surgery actually hit me. My children have had surgery before and I have never been able to walk back with them, it has always been a kiss and hug in pre-op and off they go.

The surgery took about 7 hours, I believe, it felt like forever. We see them go flying down the hall with him but no one ever comes to find us….I was panicking by this time. I am bugging the nurses, they are reassuring everything is fine and the doctor will come get me. I wanted to know why he was not in the recovery room if they said surgery was over. I was becoming agitated and my husband was trying to calm me which did not help. About an hour and half later the doctor comes out and says the surgery went well, longer than expected but he was fine. He would have to spend the next couple of days in PICU and then be moved up to the floor where he would have to start physical therapy. I was finally able to see my son.

Now 9 years later, he does not suffer from headaches, he has some minor muscle problems but overcomes them with physical therapy. He is a junior in high school, the captain of the baseball team, and plays basketball. He has come a long way. Although he will never be able to play sports such as football or hockey. He is not allowed to ride roller coasters or participate in anything that may cause a whiplash effect or severe head trauma, he is a very active young man. He has a 6-inch scar down the back of his head but no one really questions him about it anymore. I am very thankful for the people who were conducting the study. Although my son was not able to complete it and possibly help others, they helped my son and I will forever be thankful.

References:

American Association of Neurological Surgeons (AANS). (2006). Chiari malformation. Retrieved from: http://www.aans.org/en/Patient%20Information/Conditions%20and%20Treatments/Chiari%20Malformation.aspx

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3 Comments (+add yours?)

  1. Janice Rhodes
    May 20, 2012 @ 17:26:42

    Very interesting story. It reminds us to check out all head injuries in children and not to assume they are OK. Yours is a good example of healping the research community. Although your son had some affects you also found out information you might not have known until later with more serious consequences. Glad everything turned out well for you all.

    Reply

    • Ms. Jay Cortez
      May 20, 2012 @ 18:02:38

      April,
      Thank you for sharing your heartfelt and positive experience. I’m glad, for this is a great example of real-life research which benefited you and your family. Your experience encourages me to be a little more mindful about injuries to the head. In similarity to your post my 5 year old last year before she turned 4 put a small dent in her skull from a corner of a desk I had in my bedroom. She was climbing up our king sized bed and fell back and hit her head just right on that corner of the desk. She had about 3 or 4 staples and I was definitely in a panic on the ride to the hospital because it was about an hour away from our house and I had my daughter singing songs and watched her closely hoping she wouldn’t fall asleep. I can relate to your thoughts and experience as my heart was racing just reading your post. What a relief things turned out for the best.

      Reply

  2. Crystal Riddick
    May 20, 2012 @ 21:53:58

    I’m glad you shared that with us. OMG that was a touching story. So many people like to focus on the negative side of research but this research really worked out for you and your son. What if you would have told them no? Him falling while playing, being part of the research, really worked out in your family’s favor. I am so happy for you guys. Take care of your young man.

    Reply

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