HOCC: Rare Brain Condition won’t keep this spunky, adorable angel down

By: Humans of Calvert County

This mother defines strong, determined parents, who stop at nothing when it comes to finding peace and healing for their child. Come back on Sunday to hear the rest of her story(Part II below) and hear from this spunky, adorable little angel.

“She had these crying meltdowns. Almost like fragility. She fell asleep randomly. She cried in the car seat for as long as I can remember. It was so common for her to cry. Some days, I just cried with her. I felt so helpless.

We talked about it with the pediatrician, but no one really understood it. It takes a very long time to convince a doctor that a toddler needs an MRI. She had debilitating back pain when she rode in her car seat. We went to John Hopkins for an MRI. The neurosurgeon had this smugness and said, ‘We did have an incidental find of a rare brain condition called a Chiari Malformation’, but there was nothing to be done to help her pain. In the doctor’s mind, she’s symptom free.

My daughter has a rare brain condition.

I ordered every book on Chiari Malformation. That is what I do; I gather all the information I can. I reached out to people who had Chiari Malformation. I poured myself into learning everything I could.

My husband switched jobs in the spring, but the new insurance wouldn’t cover my daughter due to her preexisting condition. We had to get her covered through the state. Coincidentally, I got a hold of a doctor at Children’s Hospital, who specializes in Chiari Malformation. It took several months for us to see the new neurosurgeon and get another MRI.

In the fall, we saw the new neurosurgeon. It was a completely different vibe. The new doctor was thoroughly interested in my daughter. The doctor said, ‘She’s going to need surgery.’ I was blown away. The previous neurosurgeon was adamant my daughter would never need surgery.

The neurosurgeon said, ‘You know she’s in pain. If it was my daughter, I would do it (surgery).’

What I have to listen to, is my mother’s gut. The only thing I have is knowing my child. Knowing her pain.

My daughter had a cough later that month, tears falling down her face, ice pack on her back. That was it for me. She was in pain.

It became very clear to me that my daughter spent most of her life in pain.

Part II:

“She decorated her gas mask and made it super fun. She wasn’t afraid of the surgery. It was super tough that morning. I just put on a smile and made it a fun thing for her.

I was very thankful that she didn’t cry when we separated. She was driving through the double doors and waved “bye Mom!” I felt like I tricked her, that this was fun, but I sent her off to have surgery.

The preparation took about an hour. The doctor made a 4” incision from the top of her vertebrae to the base of her skull. Then they cut through the muscle and folded it back. The neurosurgeon said everything was really tight, the skull and tissue. Her skull was really thick. They cut out the base of the skull and removed a 2” wide and ½” high piece of skull. I had this unnerving feeling of knowing that right on the other side of the wall, the doctors were cutting opening my baby girl’s skull.

It was one long stitch with 36 cross stitches.”

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“We went to the hospital to remove my pain. 
I run fast now, want to see?
I popped bubbles at the hospital and played with them. 
I’m five!
My back doesn’t hurt.
I can bounce!
We decorated a gas mask with stickers! 
The bandages made my pain go away. I had stitches. I had my head cut open.

My river. Ten-Tens said it was ‘A River’, because it looks like a river.
If I carry the doctor case, everyone will think I’m a doctor and ask me questions.”

Stories from Humans of Calvert County(HOCC) are reprinted from thier Facebook Page with permission. If you would like to see more HOCC stories now you can visit their Facebook Page.