Having a child born with a disability is every parents worst nightmare. Most sit and wonder what they would do or how they would handle it. Holly & Issac Frasure, of Louisville, Ky, were faced with that very situation when their daughter, Evie, was diagnosed with Hydrocephalus. Hydrocephalus, or “water on the brain” occurs in about 1 our of every 500 births. This is more common then down syndrome (1 out of 800 births), yet little is known about it. This is the story of one families struggle with hydrocephalus, and what it taught them.
“We didn’t find out about Evie’s hydro until she was 2 months old. She has a congenital case of hydrocephalus so it took awhile for the warning signs to appear. As she became more alert as a newborn, we noticed that she couldn’t look up…”
Evie started life like any other child, until she turned about 2 months old. She started having symptoms of hydro, including “sunsetting eyes.” Assuming this was an eye issue, they had Evie examined by an eye surgeon. He suspected hydrocephalus and alerted their doctor, who in turn alerted the local hospital. They preformed a CT that confirmed it was hydrocephalus.
“When the NS (Neurosurgeon) came to deliver the news to us we were freaking out because the only thing we knew about hydro was what wikipedia an the Internet said. It gave us broken hearts for the longest time. Not knowing if our child would be ok or have a normal life or what the chances were to have a fulfilling life would be. I was so shocked and so broken hearted for my daughter “
The next day, surgery was done to place a shunt in. The shunt redirects the water (CSF) from the brain to the abdomen (or other places if the abdomen isn’t a good option). Evie spent 2 more days in the hospital recovering. The next couple months proved troubling, rushing to the hospital due to fluid leaking from the shunt. This would be treated with strong antibiotic and eventually Evie’s head had to be wrapped to “train” the fluid where to go. They also ended up restitching the incision.
“During all this time and learning how to take care of my precious daughter, I really hit rock bottom. I was so scared and worried for her day and night. With the help of my husband and our families and our church family (Highview baptist church) things started to look up. I clung to my faith and my God, and looked to him for comfort…. It was when I finally realized these things that I began to blossom into the mother Evie needed and still needs. I have to be strong for her and raise her to stay grounded and rooted in the Lord… Because God doesn’t make no accidents…”
Two moths later Evie caught a staff infection that got in her shunt, and it had to be replaced. Since then all has been going well.
Evie is now 16 months old. She is receiving physical Therapy once a week. She is learning to walk and loves to dance, hum, and clap to music (Both of her parents are musicians). She also sings song and loves to cuddle.
“She is and always will be our miracle child. While we still worry about her and whether or not her shunt is operating correctly, we have tried (and sometimes fail) to trust that God will take care of our little girl. We are so grateful for the way that He has protected her thus far in life. We know that He has a wonderful and special plan for her life. We cannot wait to see what kind of woman He has planned for her to be. She is my greatest joy and she is my heart!”