Have you or a loved one recently been diagnosed with hydrocephalus? Whether you are living with hydrocephalus or are a caregiver – we’re here to help you on this journey. We developed guides and next steps tailored to specific age groups and life stages.
Researchers may have the scientific expertise, but they need input from people living with hydrocephalus in order to ask the right questions and develop treatments that will benefit our entire community.
Matthew was born August 8th, 2008. He was a normal, healthy very happy baby. He was born big…8lbs 14oz and had a head to match his size. We attended every well child check and followed all the books. The first year of Matthew’s life was perfect with the exception of a few colds here and there. We celebrated his 1st birthday at a neighborhood park with all our friends and family and the big question of the day was, “Is Matthew walking yet?”. Matthew, as I said was a big boy, and though he hadn’t started walking, we weren’t concerned. His 1yr we’ll check showed he was a bit behind but nothing to worry about.
About a month after his 1st bday I started noticing Matthew tilting his head to the left. Not all the time, but I noticed. Then he’d be crawling along and suddenly fall flat on his face. One particular day, I was trying to get him in his car seat and his head was tilting so bad, so I tried to lift his head and you could see the muscles straining in his neck. It terrified me, so I made an appointment to see our pediatrician that same day. Matthew crawled all over her office. Being silly and goofy as always, but not doing any of the things that made me feel so worried. Our pediatrician is amazing and believed me even though she saw nothing too concerning. She referred us to PT at The Children’s Hospital for possible torticollis. One thing she did say, however stuck with me and that was they may want to take a quick peek (CT) into his head if PT didn’t find anything.
It was a Friday and the Friday before Labor Day weekend. I made an appointment for the following week at Children’s and went home feeling a bit silly as Matthew was back to his normal self. My husband and I decided to attend a big event here in our home town and the firefighters were out trying to fill the boot for Muscular Dystrophy. The photos of those children who were unable to hold their own heads up had me suffering from a panic attack within an hour and we left.
September 8th…I drove my son to his appointment at Children’s. I was so anxious and nervous and had a fight with my husband that morning. I knew something was wrong. Matthew’s behavior had changed since seeing the pediatrician. He was tilting his head all the time and couldn’t even pull himself into a standing position anymore. We spent over an hour with the wonderful Physical Therapist.
She looked at me and said I don’t think this is muscular and you probably need to make an appointment with Neurology. My heart fell and the pediatrician’s word came back at me about them wanting to take a quick peek in his head. I felt sick. And so confused. I left Children’s not knowing what to do and why I didn’t just stay and ask for help I’ll never know. But I left and I got on the phone to get an appointment. Every doctor was booked…for weeks. I screamed and cried and yelled and demanded…and because of this very understanding appointment setter, she found a doctor that was willing to give up their lunch to see us. So we turned around and headed back. Within 5 minutes of being in that little too, the doctor said to me that she’d like to order a CT. I asked her to tell me what she thought and very plainly she told me she thought Matthew had a very large tumor inside his brain.
They took him away, to take pictures of his little precious head, the whole time feeling as if this must be some joke. When he was all done, they called me out of this very private waiting room, which for some very odd reason gave me a sense of hope and foolishness that any of this was really happening. I came out into the main part of Children’s and saw, vaguely a whole team of doctors, walking in my general direction. They stopped me and introduced themselves and started explaining that Matthew had a very large tumor in his ventricle…..that’s about as much as I heard. I was in total disbelief and shock. My husband made it to Children’s in record time. They checked us into the cancer ward and less than 24 hours later my baby boy was having brain surgery. He was diagnosed with a Choroid Plexus Papilloma, the size of a plum, located inside his left ventricle.
His first night after surgery was rough, but he came back so strong. He still had some fluid buildup but they sent us home, giant wound on his head and all. Then his suture started to bubble, as if a little balloon was being filled just under the surface. Matthew had his 2nd brain surgery in October…just 1 month after his first. They placed a VP shunt in his dura in hopes that would be all he needed, but in February of 2010 another MRI showed that while the shunt drained the fluid from his dura, his ventricle was swelling up again. Matthew would need additional brain surgery to move the catheter into his ventricle where, unless a cure is found, it will stay for the rest of his life.
We have no idea if Matthew had hydrocephalus before or as a result of the tumor or even as a result of the removal. He has overcome SO many struggles, but we are happy to say that Matthew has been brain surgery free since that day in February 2010.
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