NavigatingLifeWithLMS

September is a month of many happenings, such as changing of the seasons and school coming back in full swing. Childhood Cancer Awareness and Chiari Malformation Awareness are two other important events in September. Most everyone has heard of Childhood Cancer, but most people have never heard of Chiari Malformation. For our family both are very real.

What is Chiari Malformation?

Chiari Malformation (CM) happens when the lower part of the brain grows downward into the spinal cord area. There are four types of CM (you can read more about it here). Kailanie has Chiari Malformation Type 1, which is the most common and less severe of the four.

How did Kailanie get diagnosed with Chiari Malformation?

During infancy Kailanie’s head grow considerably in a short amount of time. She had an MRI done, and it was discovered that she had a CM, which caused a build-up of cerebrospinal fluid (CSF) in her head. Coincidentally, the MRI lead to further investigation, which eventually led to an overall diagnosis of Lateral Meningocele Syndrome.

What other related conditions does Kailanie have?

• Hydrocephalus – the over accumulation if CSF in the brain that is a result if the chiari blocking the flow of fluid.
• Tethered Cord – when the bottom of the spinal cord is attached to tissue hindering the ability of the spinal cord to move as it should.
• Scoliosis – the unnatural bending in the spine to the left or right
• Kyphosis – when the spine bends forward

My Take on Chiari Malformation

Alright, enough with the technical stuff. Let’s get real for a minute. When Kailanie’s pediatrician told us that she didn’t fully understand the MRI results, we all agreed it might be a good idea to take Kailanie to the ER….so we did.

I’m not gonna even try to lie; I lost my sh!t. This was the first time in Kailanie’s 7 months of life that I was horrified. We had neurosurgery come in to talk with us, and they left us feeling more confused than when we went in.

We had no idea what this meant for her future, or if it was terminal. Both Kailanie’s dad and I were scared for our baby’s life. Until our angel, Dr. Sayama showed up. She explained what was going on and what she would do to fix the problem. I went from horrifically scared outta my damn mind, to just plain scared outta my damn mind after talking to Kailanie’s new neurosurgeon.

Kailanie came out of surgery on a ventilator because of swelling from being face down longer than expected. Seeing our baby intubated for the first time (certainly not the last) was a terrifying experience all on its own. As if that wasn’t enough, she ended up having a seizure early the next morning, and then contracted norovirus.

Not long after surgery, Kailanie ended up needing a shunt, and a second decompression of the CM. Thankfully, Kailanie remains symptom free. Unfortunately, many people are not so lucky and live with symptoms regularly.

Chiari Malformation is not a visible medical issue, but it can have a long-lasting and devastating effect on some individuals. So, be kind to others, you never know what invisible issues they might be battling.

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