Henley's Medical Fund

HENLEY'S STORY
My name is Henley Griffin. I was born on August 19, 2013. My parents didn’t know it before I was born, but I have a congenital heart defect called Tetrology of Fallot with absent pulmonary valve. I was life-flighted to Houston when I was just a few hours old. The awesome doctors at Texas Children’s Hospital were able to fix most of my broken heart by open heart bypass surgery when I was 3 months old. I still do not have the valve that regulates the blood flow between my heart and lungs. I’ll have to have more surgeries to fix this later.

Just a few days after finally getting to leave the hospital, my parents  got another big shock. I didn’t feel well, so they rushed me back to the TCH ER. This time, I had to have emergency brain surgery for a condition called Hydrocephalus aka “water on the brain.” In a person with normal function, the brain produces and releases a fluid called cerebrospinal fluid, but in a person with hydrocephalus, the body cannot “release” this fluid on its own. There are only 2 options to fix this, and both require brain surgery. The neurosurgeon tried to fix it without using a shunt (option 1). I went home but a few days later, my parent’s had to rush me back to the hospital for my second emergency brain surgery. Now I live with a shunt in my brain, which is basically a valve with a tube that runs from inside my brain down behind my ear and into my abdominal cavity. There is enough tubing in there so that I can grow to be over 6 ft tall (like my daddy) and not need any more added. All this happened before I was 4 months old. There is no cure for Hydrocephalus, and the only treatment is brain surgery.

All was well for about a year. Then I started having a lot of headaches, throwing up and sleeping a lot. My parents were scared, and took me to the ER several times, I even had to stay overnight a few times on different occasions. This went on for 18 long months. Finally the neurosurgeon decided that it was my shunt, and I had to have my 3rd emergency brain surgery (on my grandpa’s birthday) because that tube that I told you about- the one that’s in my brain, it was clogged. I’ve felt much better since my last surgery, it’s been almost 3 months, and I haven’t had a headache or thrown up.

My parents pray every night that I will continue to feel well and not need any more surgeries anytime soon. I’d like it if you would pray with us too.

My name is Henley Griffin, I am 3 years old, I have had open heart bypass and 3 brain surgeries. I am strong, I am brave and I will continue to fight!

Thank you for donating to my medical fund. Thank you for being MY HERO.

((Hugs))

 Henley Reese Griffin