Meet Haisley Jean — Team TRIO

Haisley Jean is my miracle baby

I was told at 16 not to expect kids because I wasn’t able to drop eggs; not knowing that there are medications to help.

After 6 long years of trying various meds, I got pregnant!

She was constantly measuring “small” overall, but the doctors said not small enough I needed to see a specialist or be concerned.

At 6 months in the womb, we learned she had deformed kidneys. They were functioning but there were spots of hydronephrosis which means her tube leading to the bladder just sucked the urine back inside rather than getting rid of it. This is something a child can outgrow. It’s just monitoring with ultrasounds and a higher risk for UTI.

Once she was born she was perfect! Aside from some sucking difficulties, we went home after 3 days as planned.

At our 3 week check-up, our pediatrician was concerned about her head circumference. She said it’s measuring smaller than what it was at the hospital. Which could have been nothing but she was concerned and sent us to neurology.

That lead to a diagnosis of microcephaly and hypotonia. He said she’s like a floppy doll. She could not hold her head up or grasp a finger.

We started with early intervention therapy and a scheduled MRI. The MRI was done at 6 months old. It showed a lack of brain matter, lack of signals telling the body what to do. It’s like your wanting to move your legs to walk.

So you think about how to move your legs but your legs don’t get the signal to move. This was very concerning to me. The neurologist said that with therapy we will see where she is in a year and referred us to genetics. That is when we got the TRIO mutation diagnosis. We also learned her father has this diagnosis as well!

A year later, she was just learning to crawl quicker but had no interest in walking. She could pull herself up to furniture but that was it. She was doing lots of early intervention therapy including speech because she wasn’t babbling, PT because she was crawling in an odd fashion which could cause additional problems in the future, and OT to address a variety of other concerns.

Fast forward to 3 years old: She is running, still oddly but she gets there quickly, she is in gymnastics, winning high supreme titles at local, state, and national level pageants, and talking up a storm! It’s still a lot of babble. She is in preschool and I have seen a huge difference in her speech. She still struggles with emotions and playing nicely with other kids. She has recently been diagnosed with Sensory Processing Disorder, on the waitlist for an Autism diagnosis and eye doctor appointment. She trips and runs into things more than she should. But overall she is a happy little girl. Haisley Jean is loving life and loves exploring.