Kyliah

My daughter Kyliah was born with hydrocephalus. During our 20-week ultrasound, the technician noticed a large amount of fluid in her brain. We were referred to a children’s hospital, and continued ultrasounds throughout the pregnancy. That’s when we discovered just how serious the issue was.  

The team prepared us for what delivery would be like and what to expect afterwards. Due to her lack of brain growth and because of all the fluid, we were given little hope that she would be capable of eating, breathing, walking, or talking. Pregnancy and preparing for Kyliah’s arrival was proving to be the hardest part of our journey so far.  

There were so many unknowns. She had her first non-programmable shunt placed at two days old. We were not prepared for how much her head would change, and it was frightening at first. But within a couple of weeks, it started looking much better.

Nearing three months old, she had her first shunt revision. We knew something wasn’t right when she became very fussy, sleepy, and started vomiting. Recovery for her went very smoothly, and within a couple of days, she began acting much happier. 

At around 6 months, she became fussy again. I started noticing there was some fluid build-up around the shunt site, and soon it was time for another hospital visit. Our doctors have been extremely helpful anytime I have any concerns and have had me come in immediately to check it out. Like before, she needed a shunt revision. This time, the doctor replaced her non-programmable shunt with a programmable shunt. 

Thankfully, recovery has always been easy for her, and this time around it was no different. She started hitting milestones—like rolling over, sitting up, and crawling. Some were just a little late, but she was still able to do those things. At 15 months old, she is trying to walk, saying about 20 words, and thriving. 

Kyliah has been in early intervention with occupational therapy (OT) and physical therapy (PT). She has amazing doctors who listen to our concerns and give her the best care. While sometimes I do notice some differences between her and my other children, her outcome has been so much better than we could have ever imagined. 

We have been sharing our journey on Facebook and TikTok @kyliahs.story. 

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