Welcome to my Team Hayden HA WALK Page
My name is Kristina Dawes, and welcome to my Hydrocephalus Awareness page! My husband and I have two children, Hayden and Declan who are currently 6-1/2 and 3-1/2 years old and the best of friends. Due to multiple severe pregnancy complications (HELLP syndrome and Pre-Eclampsia), Hayden was born extremely early at 26 weeks gestation on December 1, 2013. He weighed 1 lb 4 ozs, and was 12 inches long. From day one, all he has done was fight for his tiny life. He is the definition of a fighter! Being born so small, and so early, Hayden was considered a micro-preemie. A Micro Preemie is a child who is born weighing under 1lb 12ozs. Born so premature came with a lot of hurdles and battles. Hayden suffered a grade 3 & 4 brain bleed which resulted in a condition known as Hydrocephalus. Hydrocephalus is the build up of fluid in the ventriciles deep within the brain.
Due to complications from his prematurity, Hayden is 100% G-tube dependent, has feeding and swallowing difficulties that he receives numerous therapies for. He has speech and fine motor disorders, Spastic Diaplegia Cerebral Palsy, Slit-like Ventricles from being shunted so tiny, Autism, and ADHD. Due to his complex Hydrocephalus, Hayden has TWO VP shunts placed to help drain the spinal fluid that builds up in his brain. There are two catheters placed on the right and left side of his head and tubes that run all the way down and drains in his tiny belly.
Because a shunt is a "machine" it can malfunction or just stop working at any given time, and the fluid that is supposed to flow and drain to his belly will stop, resulting in the pressure building up in his head. When there is a malfunction, Hayden gets very sick. Sometimes there are warning signs that can be slow overtime, and sometimes there are no warnings at all, just a matter of hours between when he is "fine" and then all of a sudden critical. The only way to make him better is brain surgery! There is no medication, there is no special treatment, just brain surgery.
Hayden has endured EIGHTEEN shunt revisions! On July 2, 2020 he spent two weeks at Johns Hopkins Childrens center where and underwent both his sixteenth shunt revision on the right side as well as a SECOND Bilateral Subtemporial Decompression (Almost a year from the day we did the first decompression!) to relieve the pressure that was still building up. The most recent revisions are August 13, 2020 where he endured another two revisions. His right shunt was both malfunctioned and broken, and his left shunt tubing was broken! Hayden has now went through SIX surgeries in just twelve weeks due to his hydrocephalus.
At just 6 1/2 yrs old this is unacceptable and much more needs to be done to help families living with hydrocephalus. As his mom there is nothing I can do to make this disappear for him, or to take away his pain. But the one thing that I can make sure of, is that I try to raise as much awareness as possible, everyday.
Together we can help create an amazing team to help us support, gather together, and raise donations so that we can find a C.U.R.E. These children should not have to continue undergoing brain surgery after brain surgery!
Please join me and my family this year as we W.A.L.K (roll, dance, jog, bike, etc) to End Hydrocephalus! A shunt is not a cure! Many patients endure multiple brain surgeries throughout their lifetime, some more than 100. Please help us in finding a cure so Hayden does not have to be apart of the 100 club. It's a club that no one wants to have to join.
Imagine life knowing that the next brain surgery lurks around the corner because your shunt could fail at any moment. No one should have to live like this. This is WHY we walk and also why WE need your support. Please consider donating and help us reach our goal. Help us to say #NoMoreBS (No more brain surgeries). Join our team and walk with us, place a small donation, or help to spread awareness about Hydroceplalus. Your donation is greatly appreciated and will go far in helping us find a cure and improve the lives of people living with hydrocephalus
From the bottom of my heart, THANK YOU!
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