Meet Jacob

Wow. Jacob is our little sweetheart. He is almost 21 months old and is child number three in our family.  (He has a 6 yr old sister, and 2 yr old brother.) We are so grateful to have him here! We found out that something was wrong with our baby when I was about 16 […]

For Pregnant Mothers

I found some wonderful advice to pregnant mothers on a very good website for the International Federation for Spina Bifida and Hydrocephalus.  The following questions/ideas are addressed.  Click here to explore the advice/answers. -I am pregnant with a child with Spina Bifida and/or Hydrocephalus.  The child I am expecting has a disability, what now? -So […]

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Meet Emylie

Spina Bifida. Something I had heard of but really hadn’t until I was pregnant with my daughter Emylie. I was about 18weeks along when I found out that my baby might have Spina Bifida. When I first got the call from my doctor regarding my Maternal Serum Blood test results I immediately knew something was […]

Meet Lily

This is Lily. She was born with Spina Bifida. We found out she had spina bifida when I was five months pregnant during a routine ultrasound. She had hydrocephalus, the Arnold-Chiari Malformation, bilateral club feet and an opening in the spine that started at the level L1. She was born by c-section at the University […]

The Kongaikas

Hello, we are the Kongaika family. We moved to Utah just before the birth of our daughter, Lily. We have been so happy with the care she has received so far at Primary Children’s Medical Center. We have found a lot of information, support, hope, positive energy and a great deal of expertise at SB […]