Layla, 2

Toddler with hydrocephalusLayla was diagnosed with an Occipital Encephalocele at 20 weeks in the womb. Encephaloceles occur rarely, at a rate of one per 5,000 live births worldwide. Encephalocele is a neural tube defect characterized by sac-like protrusion of the brain and the membranes that cover it through openings in the skull. These defects are caused by failure of the neural tube to close completely during fetal development. Layla was only given a 50% chance to survive to her birth. And we were told that if she did live she would have many disabilities and impairments. We also knew that she would most likely have hydrocephalus when she was born or develop it later on. We were devastated to hear this news about our baby girl. However, we didn’t give up on her, she had hundreds of people praying for her before she was even born!

Layla was born 6 weeks early on January 10, 2014, weighing 5lbs 15oz and measuring 18in long! Layla came out breathing on her own and was doing so well that she had surgery when she was 1 day old to remove her Encephalocele. After surgery we were told they found only fluid in the sac and no brain matter, which was great news!!! We stayed in the NICU for 21 days and then we were finally able to go home!

We watched her head growth closely and at 4 months we were told she had developed hydrocephalus and that she would need surgery. Her neurosurgeon decided to do the endoscopic third ventriculostomy (ETV) surgery in hopes to avoid the shunt. Unfortunately it did not work so a month later Layla had surgery again to have a shunt placed. Once she received her shunt she was finally able to track and really progress with her milestones. We are still in early intervention and she is working really hard on all of her goals (especially walking). She is behind on a few areas but doing great otherwise! We are very blessed and since her shunt was first placed we have had no issues with it.

Layla turned 2 in January, so we are coming up on her 2nd shuntiversary!!! All of her doctors and neurosurgeons have been so amazing during this journey and we couldn’t have done it without them!!!

We also thank God every single day for blessing us with Layla, she is our little miracle! He has been there for us every step of the way, and he has given us peace and strength when we’ve needed it the most. Our God is so amazing!

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

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If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

 

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