My best friend’s daughter, Paula, was discovered to have Arnold Chiari Malformation when she was 5. This means that the back portion of her brain has been pulled down to the base of her skull and into her upper spinal canal.
According to Jeffrey W. Campbell, MD, “There are four different types of Chiari malformation (I, II, III, and IV). Chiari I is the most common. Doctors don’t know exactly what causes Chiari I malformation. A baby can be born with Chiari I malformation or it can develop in the first few years of life. Less often, the malformation can happen later in life from trauma, infection, or other medical problems.”
Some children who suffer from Arnold Chiari malformation do not present with symptoms, but others do have symptoms that are crucial to how they will live their lives. Paula presented with weakness in her legs and arms, numbness, sleep problems, balance and mood issues, gross and fine motor abnormalities, and developmental delay. However, these symptoms can be found in other conditions, which is why Paula was not diagnosed with Chiari earlier. And the fact was that she had the condition when she was only 18 months old.
My friend confided in me then, her guilt of her frustrations with Paula. Paula wasn’t able to speak complete sentences when she was 3. Paula, too, was always sad and anxious. She didn’t want to see family members who would visit them. She would just play alone and her mood was erratic.
Undergoing Decompression Surgery
Then came the miracle the family was waiting for – a neurosurgeon from Cincinnati Children’s Hospital evaluated Paula and recommended that she undergo decompression surgery, which leads to making more space to accommodate the brain and the spinal cord.
We were all amazed with the result post surgery. The development was very fast and the improvement was quite evident in the way Paula moved, felt, and spoke. Her balance improved and she no longer felt the numbness in the hands and feet. The drooping of her eye was gone and the best part was, two weeks post surgery, she went back to school. It was an emotional moment for the family. She was speaking a few words, and then phrases and eventually sentences.
Paula is now 13, a ninth grader. She is much better now, but my best friend is still pretty cautious. She’s just so thankful that they got through the ordeal and that Paula is living an almost normal life.
However, Brad Weprin, MD, noted, “Surgery is most beneficial for individuals who have clearly defined problems related to Chiari. There are a lot of people around the country being operated on for Chiari who do not need to be, and they are now experiencing complications that could have been avoided.”
Timothy C. Hain, MD, advised, “As in most decisions, one should weigh risk vs benefit. In Chiari surgery, risk is substantial (your skull is opened). Benefit is minimal as Chiari’s, in general, do not progress rapidly if at all.”
Tips For Parents with Children Suffering From Arnold Chiari Malformation
Whether you’ve just heard about the sad news about your child or you’ve been dealing with it for some time now, do read below and learn some pieces of advice from my best friend’s experience, in the hopes that you, too, may help your child deal with his or her condition.
- Educate yourself about Chiari. Do your own research. Though your doctor would surely explain the condition to the family, there’s no harm in learning more about it by reading. It will also enable you to face your fear and be aware of the situation.
- Encourage your child to focus on what she can do instead of dwell on the things that she is unable to perform. Paula loves football but she can’t play, so we asked if she wanted to join the school ballet or golf team, and she did.
Reach out to people who are in the same situation as you. You can connect to caregivers who have experience caring for Chiari children. Join a support group. It helps to hear from others and being able to share your stories to them as well.
- When you think about how life can be easier for you in dealing with the condition, please don’t forget to think about your child too. Ask her where she is more comfortable staying, or if she’s okay with some activities that you want her to do. I know you want what’s best for your child, but do give her ample freedom to decide on some things that give her comfort and security.
- Connect with your child’s friends and let them know your child’s limitations. Things like playing rough or doing vigorous activities are a no-no, so they should be aware of these.
- Spend time with your Chiari child as well as your other children without the condition. They’re children. Though they may get that their sibling has disabilities, it doesn’t mean you’ll let them understand you all the way. After all, it is your responsibility to take care of them, show them the same love, and treat them the best way you can.
Your child may have different symptoms than the other children with Chiari. Don’t get depressed – it is a fact that every kid with the condition is different. Just open your mind. Stay positive – for you, your child, and your family.