Hydrocephalus Research WALK

Hydrocephalus Research WALK

The Phoenix Zoo

Saturday, February 20, 2010

registration starts at 7:15am

WALK starts at 8:15

Zoo admission included with registration. No fee for registering.

After the WALK there will be entertainment and you can stay and enjoy the zoo for the day. Raffle tickets may be purchased for $2 each. Lots of fun prizes this year!

We would like to invite all our family and friends to join us at the 2nd Annual Hydrocephalus Association Research WALK. Our goal is to raise $1000 for the research of hydrocephalus in the hopes to find a cure. Please click on the sidebar link for General Donation if you can't participate or for registration if you are able to participate. Zoo admission is included with registration and a donation is not required but we would appreciate a small donation if possible.

Our journey with hydrocephalus began when I was pregnant with Carly. We were told at our 18 week fetal survey that Carly had extremely large ventricles in her brain and likely had other genetic problems. It was suggested that we consider aborting because she would most likely suffer severe brain damage and have severe health issues. That was never an option but we chose to have an amniocentesis so that we would could seek the proper medical care and be prepared for her birth. In-utero Carly was diagnosed with Aqueductal Stenosis which caused hydrocephalus. I had ultrasounds every 3 weeks to monitor the ventricular growth and at each visit they continued to grow rapidly. The decision was made to deliver at 32 weeks if the growth continued. We made it to 32 weeks and while the growth continued it wasn't growing at the rate it had been so we went to a week to week basis. By 35 weeks the decision was made to deliver. I had another amniocentesis to check lung maturity and although she wasn't quite ready, our neurosurgeon felt that waiting longer could cause her to suffer even more brain damage.

Carly was born Friday, March 21, 2008 by c-section and was immediately intubated and taken to the NICU. Her head was extremely large and after her first brain ultrasound it was determined that she would have extreme brain damage, would survive off machines, would never walk or talk and would probably not have a long life. Our road in the NICU would be months. SHE WAS IN THE NICU FOR ONE WEEK!!! Miraculously, by her next brain ultrasound it was like a completely different brain. She still had the hydrocephalus and would need a shunt placed but her prognosis improved. Although we still did not know the extent of damage we knew that she would be okay.

Carly had a VP shunt placed 3 weeks after birth on Friday, April 11 and was released 3 days later.

Because of the location of her shunt, Carly could not be on her back and could only lay on the sides of her head. This caused her head to be very tall and flat on the sides so she wore a helmet for 4 months to help her head mold to a more normal shape.

Carly will be 2 in March. She has minor developmental delays and has physical therapy, speech therapy and early intervention to help her. She has gone from a 4-5 month delay to 1-2 months so we have seen a drastic improvement! Last March after her yearly MRI she was diagnosed with Chiari Malformation and Agenesis of the Corpus Callosum which are both brain development abnormalities. Both have health risks but have been non-symptomatic so far. She will have another MRI in March to check everything. We have been very lucky to not have any malfunctions with her shunt as many children suffer infection or malfunction and have a shunt revision within the first year. This is my baby girl that would most likely be severely brain damaged and that I should consider aborting. Goes to show Dr's don't know everything!

There is no cure for hydrocephalus. Please help us support Carly and join us as we WALK to raise awareness and raise money for hydrocephalus research.