10 tips for parents of kids with Chiari malformation

10 Tips for Parents of Kids with Chiari Malformation

In late 2006 when he was 4 years old, my son Matthew was diagnosed with Chiari malformation. With this condition, the back of the brain goes down below the base of the skull and into the upper spinal canal. Some kids with Chiari have no symptoms, but some have symptoms that are life changing.

Matthew had weakness his in arms and legs, numbness in his hands, snoring, sleep apnea, memory problems, lazy eye, balance issues, mood and anxiety disorder, speech delay, fine and gross motor delays, developmental delays, and fluid in his ears. The symptoms often can be attributed to other conditions if the Chiari hasn’t been found yet. That’s what happened with Matthew. His symptoms started when he was 18 months old; he wasn’t diagnosed until nearly three years later.

Matthew’s communication skills were so severely affected by his Chiari that at age 3, he was only speaking about three words. That led to a lot of frustration — for both him and us.

Fortunately, we found Francesco T. Mangano, DO, a neurosurgeon at Cincinnati Children’s. It was wonderful to finally meet someone who understood what we had been going through. Dr. Mangano suggested decompression surgery (which makes more space for the brain and spinal cord.) Matthew’s surgery was scheduled just a few weeks after he was diagnosed.

The transformation after surgery was immediate and amazing. Matthew’s fine and gross motor skills improved. His balance got better. The numbness in his hands went away. His lazy eye was gone. Two weeks after surgery, he was back in school. The best thing was that within a few months, his language skills had improved to match that of his peers. It was incredible!

Matthew is now 12 and in the eighth grade. He was on an IEP in preschool and kindergarten but hasn’t been since first grade. He’s so different now, but we still have to be cautious. Whether you’ve just received a Chiari diagnosis or are a seasoned veteran, here are some things I’ve learned along the way that may help you better cope with this condition.

10 Chiari Malformation Tips for Parents

  1. Research Chiari, but not so much that you frighten yourself. Talk to your doctor about where to find reliable information. Educating yourself can help you understand your child more and learn what to expect.
  2. Connect with other people who know about Chiari. Talk to caregivers who are experienced with the condition and parents with Chiari kids. Participate in a Chiari walk. Build your support system. It helps so much to hear from others who have been there.
  3. It will be hard to see your child for the first time after surgery. Matthew looked helpless. His neck was hurting, and he couldn’t move it very well. He was frustrated because he didn’t understand why he was in pain. Hang in there — they heal quickly.
  4. You might find yourself questioning everything. I’m constantly asking myself questions: “Should I be doing more now to set him up later in life?” “Am I being overprotective?” “Am I letting him do too much?” It helps to get to a place where you’re doing what you know is best for your child but you’re also allowing them some freedom. For me, finding that balance has taken a lot of trial and error.
  5. Steer your child toward what he can do rather than focusing on what he can’t. Matthew would love to play football and hockey but he can’t because of his Chiari. Instead, he’s enjoying playing for his middle school golf team. Be encouraging.
  6. Work with your child’s friends and siblings so they understand what’s off limits. Our neighbor kids know they can’t tackle Matthew and they have to be careful roughhousing. It’s better to be safe than sorry.
  7. Balancing your time and attention between all your children can be hard. It’s easy to get consumed in the Chiari world. Take some time to do something special with your kids who don’t have Chiari.
  8. Educate the adults in your child’s life. Matthew doesn’t want anyone to know about his condition. But, for his safety, I have conversations with his coaches and teachers so they know what to expect. They need to understand why he’ll sometimes miss school, or why he can’t participate in certain activities. Our school district has been very accommodating.
  9. Be prepared for anything and everything. Every child with Chiari is different. No matter what stories you’ve heard, yours might be different. Stay positive.
  10. You are the best advocate for your child! If something doesn’t feel right, question it. Get a second opinion if you feel like you need one. Don’t be too afraid to ask for help, and don’t be too proud to accept it.

Chiari malformation can present a lot of struggles. But the kids behind the condition are worth every single one.

To learn more about how we care for patients with Chiari malformation, call 513-636-2371.

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Merideth Rought

About the Author: Merideth Rought

Merideth Rought and her husband Chris are the parents of three boys, Anthony, 17, Matthew, 12, and Gary, 10. Chris works full time as a letter carrier for the Post Office. Merideth works part time so she can stay current on Matthew’s medical conditions and devote more time to her family. The family lives in Mason, Ohio, which they feel is the perfect location for the amazing care Matthew receives at Cincinnati Children’s!

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  1. Jan Wahnon September 24, 10:56
    I loved your article. Actually, it is my story too. My daughter was finally diagnosed in 2005 at 4 years old after ear surgery, eye surgery, and a multitude of learning disabilities. She had her decompression and today she is an A student, a happy healthy 15 year old girl. Thanks for sharing.
    • NANCI BRADLEY December 31, 12:15
      My daughter had seizures when she was 8 yrs old. Know she has grown out of them and know at 17 yrs old she came down with a bad headache, pain in the back of head, hard time swallowing, and getting sick so she was missing school alot, so i called the doctor for her seizures and he ordered a MRI and their he told me to go see a neosugeried and he said my daughter has Chiair I never heard of it before until know. My daughter needs the surgery and she is a senior and I am so scaried and she has been missing alot of school or being sent home from school from this. I do not know what to do because I am know at this and she likes to swim but I heard she can not dive into the water and she was on a swim team. I am reading alot on the internet and scary things about Chiari. My hushand does not understand what my daughter is going through.
      • Ejb April 05, 17:55
        Every one is different, but, I am about to hit 50 and had decompression 13 years ago. I lead an active life with a 12 yr old son. I swim, golf bowl and dance. Life can be lived (and should be lived) to its fullest as long as you don't over do things and respect your limitations. Your daughter can grow up and have a family and a wonderful life... with restrictions, but wonderful just the same. Get the best care she needs and love her. That is the best way to help.
        • Nell June 05, 23:54
          Ejb, I am so glad I decided to read this post and comments. My 35 yr old daughter was diagnosed with Chiari, and had surgery 1 year ago. She is married, and has a family... she thinks I'm a little overprotective, but she humors me (for the most part!). I wish you well, and appreciate your wisdom!
  2. Kim September 24, 11:15
    Thank you for your encouraging words. We are having a hard Chiari day around here, some days are just like that no matter what you do! My son is seven and is having a hard time understanding why he can't play the same sports as his brother and friends. Golf is a great idea!
  3. Robin Helmandollar September 24, 13:02
    Absolutely wonderful! Beautifully written and expressed, and there's no denying the love behind it. Grandma & Grandpa would be very, very proud. As is your Uncle.
  4. Merideth Rought September 24, 13:32
    Thank you Cincinnati Children's for giving us a voice and bringing awareness to Chiari Malformation. Thank you to Dr. Mangano for all you have done and continue to do for us!
    • TRUE o May 19, 18:33
      Thank you for the article.. I was diagnosed at 28 now 36 and am still wary of decompression surgery.. I am happy to hear his life has improved and hope is always there.. much love and blessings sent.
  5. Veronica Marks December 23, 11:50
    I'd never heard of Chiari malformation before reading this article. I can only imagine how frustrating it would be as a parent to know there's something wrong but not know what it is. Thanks for sharing the things you learned from your experience with your son. They are some really useful tips, even for other conditions as well.
  6. […] Chiari malformation can present a lot of struggles. But the kids behind the condition are worth every single one. Source […]
  7. Cris May 03, 13:46
    Thank you so much for sharing your story. My son's surgery is scheduled for two days from now and I was looking for someone with a positive and uplifting message regarding Chiari. His story is much the same as yours, so thank you thank you thank you! We're very anxious and nervous about the surgery, but are looking forward to the ways this will improve his life in the long term. You're post was very encouragin for me...thanks again!
  8. Ellen June 02, 11:45
    Thank you for you article. My daughter was diagnosed at 1 year old, she had surgery a few months after her 2nd birthday. She is a year post surgery and is doing worlds better, but I still I have had many worries about her future. Seeing this was what I needed, to hear a story of a child who had surgery at a young age and how they did after growing up. Thanks again.
  9. Angie August 30, 16:17
    I had decompression surgery following my adult diagnosis (and a six month span of rapidly increasing symptoms). My biggest regret is not having an earlier diagnosis so I could have had surgery before I was left with permanent nerve damage and other issues (I have a syrinx - cyst in my spinal cord - due to the Chiari). I would hate to put my child through the surgery, but that wouldn't stop me from doing it! It's a scary thing with no guarantees, but worth the risk as far as I'm concerned. I'm amazed at the 2 week recovery! It took this old body a lot longer ?
  10. Crickett August 31, 23:31
    My daughter had decompression surgery at age 7. We found out by pure luck that she has chari. We had no clue. It wasn't until she fell off a horse did we find out. Her symptoms were mild to moderate depending on what you looked at. She is now 14. She is doing great!! The hardest part about her wasn't the surgery or the physical healing it was her having to relearn her emtions and self control. She would be happy one minute then hysterically crying and hyperventilating the next for no reason. It was heart breaking but we got thru it. Took just over a year for her to gain control of her emtions. She had alot of compression on her frontal lobe. At 14, she plays in the band, choir and plays basketball. She has just blossomed over the years. Having a good active life with Chari is possible. I am thankfull everyday that she fell off that horse. We had an amazing surgeon in Georgia. Dr Thompson is simply amazing. He worked wonders for us. And was straight forward with all our questions. This is the short version of our story. Good luck to all and tons of love and hope.
  11. Leah September 01, 19:02
    My daughter has Chiari, had a decompression surgery at 2 months old while still in the NICU with a Trach, ventilator, and G-tube. She has/had floppy airway, paralyzed vocal cords, central apnea (multiple times a day she stopped breathing and turned completely blue), and a host of other issues like hydroceohalus with VP shunt and intellectual delays. After her decompression she spent another 3 and 1/2 months in the hospital. She is still Trached and on a ventilator and has a G-tube. She requires 24/7 medical care and we have nurses come to our home several hours a day to help care for her. Chiari has been a complete nightmare and has devastated our whole family.
  12. Crystal December 16, 11:18
    Hi there, this really just helped me especially that you are a parent writing it as I am where you were years ago. My son just had the decompression surgery and the opening of the dura to help start the csf flowing. We have noticed an immense change in our lives. I noticed you said your son had sleep issues as well, after his surgery did he ever suffer from insomnia as ours is right now.
  13. Codie May 09, 08:25
    I agree with the second opinion. Our sons neurologist found it after he started having seizures at 14 months. When I refused to keep him on medicine because it was making him so ill, and he was still having them, he dropped us as a patient. He said my son wasn't having any symptoms. He has seizures all the time, he has horrible balance, he gets what I assume is headaches because he bangs his head on the ground screaming, he drinks excessively, and he will pull at his ears a lot, bit they're not infected. I was baffled that he had the nerve to tell me he had no symptoms. Needless to say, our family doctor sent a referral to Duke. We are getting to see dr Fuchs, he actually operated on my husbands Chiari. Good luck everyone!
  14. TS June 14, 15:50
    Finally, a great article and advice about one of our son's conditions! It brought tears of relief to read of another family's experience. Noah was symptomatic for years between having the Chiari malformation and the hydrocephalus. Speech delays, balance issues, weakness in his muscles, all the time believing it was taking him way to long to catch up from his prematurity. He had headaches that we didn't know about because he thought they were normal, it had been a part of his everyday experience for over 12 years before we even knew about them. He thought it was normal to have excruciating pain when you sneezed, things like that. I hope this article helps another family to discover this condition before their child has to suffer for years. After two decompression surgeries, due to just growing and getting older and our bodies amazing efficiency of regrowth, we still have to worry about blows to the head or head trauma. Like everyone with Chiari, Noah will never be able to play football or wrestling or do other activities that could put him jeopardy. And it is a constant struggle to find the balance of risk vs normality. Adding a shunt for hydro is another complication. Education is key, as is support for the entire family. Siblings suffer, too, just in different ways. My hope is that more people understand Chiari Malformation. Apparently there are many out there who have it but are not symptomatic or have not yet been diagnosed, or wont be diagnosed until after a head injury or car accident. There is a treatment. And that means there is always hope! So thankful for this article!! Family's with a Chiari sufferer, we are not alone.
  15. My name is Rose December 04, 07:22
    My little darling Kendall will have Chairi decompression surgery this Wednesday, December the 6th. I have cried an ocean. Please be in prayer for her. Her vobabulary is incredible. She has a growth hormone problem, and her doctor ordered a MRI to look at her pituitary gland and found this Chairi, which I had never heard of. I have resereached this and this surgery does scare me. Very serious surgery. God willing, she will come out of this even better. I pray this will fix the few things wrong with her. She is blind in her left eye, but she has had surgery for a lazy eye, but did not help her vision. She weights about 34 lbs and Kendall is 6 years old. I pray she will just be normal. She is beautiful and very smart.
  16. Crystal F June 27, 17:57
    As well as your son did mine had decompression surgery at the age of 4. That was almost 3 years and seeming to some of problems happening again. We are going to see pediatric neurologist tomorrow. He wants so bad to do some of same sports his older brother is getting to do.
  17. Teddi January 15, 15:01
    Thank you for sharing your story and tips. I think your tips are spot-on. So thank you very much! However, as a fellow parent with a chiari kid, I think the most important thing of all to post in your article is #1: take care of yourself. If as a parent, you are stronger and healthier, you will have more energy to support your child during this awful ordeal. Parents need to take time to walk, exercise, relax, meditate (or just breathe) and see a therapist if necessary. Having a child with Chiari is awful, so parents need to do everything to take care of themselves first because it is a long journey. PS my daughter is 16 and healthy post decompression! (Thanks to an amazing surgeon and continual migrelief vitamins. It is shocking how much migrelief helps with the headaches.) Thanks again for posting your tips and I hope you will consider adding "take care of mom" to your list.