On valentines day 2011, I received a phone call from my daughters baby sitter while at work. She told me Layla might be sick and she had a low grade fever. I knew that I should come and get her, and take her to be seen by a doctor. Layla was only 10 months old at the time, and with her being so young I took this very seriously.
I tried to call and get her in to see the pediatrician, but their office was already closed. My next best option was to just run her to Carlisle Regional Medical Center to be checked out. When we got there they asked me her symptoms and I told them she has cold symptoms with a low grade fever. The doctor (Dr. Scott Rankin) took a look at her and told me he’d be right back. When he came back and started checking her out, he spent a really long time checking her head- and asking me about her soft spot & developmental milestones. He seemed confused as to why my 10 month old didn’t crawl or sit up unsupported. I however thought that she was just going at her own pace.
Dr. Rankin left the room again and was gone for about 45 minutes and when he came back and started explaining to me what he thought was going on I felt my body turn cold. He said “well miss I think you can just give her Tylenol for her mild cold, but I think there’s something more serious going on here. At her age her soft spot should be virtually closed, and hers measures 10cmx10cm.” At this point I’m feeling ill; I don’t know if I even heard much else of what he said. All I could think was how did I not know this?! How could a mother miss this?! And WHY didn’t anyone else notice? The doctor told me to call down to speak with Dr. Deb Byler at the Penn State Hershey Medical Centers’ pediatric neurology center and schedule an appointment with her, well I did just that.
Two days later we are meeting with Dr. Byler and they decide to do some scans of Layla’s brain/skull to see what’s going on. In the recovery room I could hear whispers about her head, and then the phone rang. Dr. Byler called down and spoke with another doctor that was helping us and he gave me the news that would haunt me for the rest of my life. “ma’am I’m afraid your daughter has Hydrocephalus. We are going to have to do brain surgery Imediately.”
They explained hydrocephalus to us as a condition that you can be born with or acquire for several reasons. Basically her brain produces too much cerebral spinal fluid (CSF) and they need to put in what’s called a ventriculoperitineal (VP) shunt to drain the fluid from her brain to the peritoneal cavity.
The next 4 days were such a blur for us. They admitted her into the hospital and said that she wasn’t allowed to eat or drink anything because they were going to add her on to the surgery list whenever they have an opening. She didn’t eat/drink for 36 longggggg hours. (they had her on IV fluids, but that doesn’t fill your belly up.) For 36 hours straight, I had to listen to my 10 month old scream and cry for food. She would cry until she fell asleep and wake up and start crying again. That was one of the worst things I have ever had to witness. It chokes me up just thinking about it. How do you explain to a 10 month old baby that they can’t eat?! It was awful.
36 hours after admission they got her into surgery. They have you wait in a giant room with dozens of others waiting for their loved ones to get out of surgery. It’s a very tense environment, to say the least. The phone finally rang and they called me up to talk with Dr. Mark Iantosca who is the neurosurgeon that put the shunt in. Dr. Iantosca said everything went well and that I could come and see her in recovery.
When I got there she was still pretty sedated, and had her head all wrapped up and her belly wrapped up as well. They had to shave her hair on top and along the side where she would need cut/drilled into. She had a 2″ long incision on the top right side of her head, two bor holes-(where they drill a hole into the skull) on the right back side of her head and a 2″ incision on her belly by her belly button. She was bruised the whole way down her right side of her body from them trying to place the shunt tubing.
She made it 4 months before she needed another operation. As you’ll see in the next photo, fluid began collecting along the shunt tract, leading us to believe it wasn’t working properly.
With the issues she was having, they needed to replace the shunt. Around Fourth of July weekend; 9 days after she got sent home, she had to have another replacement surgery.
Layla had a total of 5 brain surgeries in a 10 month time span, thus resulting in permanent brain damage. She was later diagnosed with severe ADHD, and Autism spectrum disorder at 4 years of age. She has been in therapy since 13 months old, and still to this day does 15+ hours a week of therapy, and attends a private school for children with autism.
I am so thankful for all of the doctors and nurses who saved my child’s life. If it wasn’t for Dr. Rankin at Carlisle Regional Medical Center, who knows how long we would have gone with her condition undiagnosed. I sent him flowers and a picture of Layla a few weeks after her 1st surgery to thank him. He truly is an amazing doctor!
I am telling her story because it needs to be talked about. Hydrocephalus effects 75,000 Americans every year, and in countries like Vietnam, there are entire orphanages for children with hydro; it’s essentially where these kids go to die.
Please help me spread the word by sharing this post anywhere and everywhere from now until October while we fund a Cure for Hydrocephalus.
*donations are tax-deductible*