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.