Hydrocephalus may be Treatable

Treatment
Hydrocephalus is treatable, but is considered incurable. Shunting may be used which controls pressure by draining spinal fluid from the bloodstream. The shunts are surgically inserted in the ventricles of the brain with the lower end in the heart, abdomen or outer lung lining. This is a lifetime operation. Shunts are usually not removed.

Conditions Associated with Hydrocephalus

There are several problems associated with hydrocephalus:
• Learning Disabilities - There may be learning disabilities that require additional assistance, and problems with memory are common. The learning curve extends from an average to above average intelligence, to severe learning disabilities and mental incapacity.
• Difficulty with memory retention is commonly seen in those with learning disabilities.
• Visual Skills - Most will have some form of visual problem. Depth perception problems are common, and blindness is also possible.
• Other Impairments - Some will have an inability to stand any touch, and may also have a problem with light or loud noise.
• Motor Skills - A great majority of children with hydrocephalus,as many as 75%, will suffer from loss of motor function.

Why does Hydrocephalus Occur?

There are a variety of reasons for this condition. Here are a few:
• Some people are born with hydrocephalus . 50% or more of cases are congenital.
• CSF fluid may drain improperly due to tumor, either benign or malignant.
• Premature delivery is sometimes the cause. Early birth can cause hemorrhage and lead to blood clots and a blockage of the CSF.
• Some cases may be genetic.
• There is a link between spinal bifida and hydrocephalus. Possible causes are the inability of spinal fluid to drain properly.
• Other disorders may cause hydrocephalus.
• Inflammation of the brain caused by meningitis may lead to the condition.

What is Hydrocephaus?

Hydrocephalus is a condition in which the accumulation of cerebral spinal fluid in the ventricles of the brain causes them to swell. In babies and small children, this may cause the head to enlarge due to swelling. Because the fluid flow is atypical, it goes over the outside of the brain and then travels the spinal cord, and eventually enters the bloodstream. There is an imbalance in people with this condition between the amount of CSF produced and the rate of absorption. Approximately 1 out of 500 live births are affected by this condition. Hydrocephalus afflicts more than 10,000 babies each year and is one of the most common of all birth defects.

A Blessing in Disguise

Andrew was born with both his eyes facing out, which is kind of rare because most of the kids that have eye problems are born with them in or crossed.
He also has a disorder called septo-optic dysplasia. It is a rare mid-line defect that causes problems with the pituitary gland, and is associated with optic nerve hypoplasia, which he also has.
Andrew has polydactyl syndrome - 6 digits on each limb.
Because of the hydrocephalus, they took an MRI right away and we were so lucky to discover his other problem. Andrew has severe reflux which warranted a fundoplication.
Andrew is also hypoglycemic due to the septo-optic dysplasia, so he gets MCT oil in his formula, which has caused a very rare side effect on his G-tubes. He has gone through 11 G-tubes in 3 months! That amount would usually last a kid 2 years.

All of our nurses say that Andrew is the most complex kid they’ve seen who doesn't require machines. Andrew is also blind, but knows his mom’s and dad’s voices as soon as he hears us.

He is hypotonic from the waist up and is no longer able to eat by mouth because he just recently started to aspirate. They think he is doing that because he has a very high palate.
Although I've rambled on about Andrews problems, I have to tell you all how much we LOVE Andrew. He is the miracle baby that took us ten years to have!
Nancy Mendola (Published 2000)

His Story: Told through Andrew's Eyes

Hi, my my name is Andrew Mendola. I am ten years old. I live with my Mom and Dad and my dog, Frosty.

I was born with Hydrocephalus, Septo optic dysplasia, Cirrhosis of the Liver, Arnold Chiari Malformation, and Polydactyl Syndrome.

The first few years for me were pretty rough. My mom knew I had Hydrocephalus from an ultrasound she had when she was only nineteen weeks pregnant. Thank God. From there she was able to find the right doctors that we needed. I was scheduled to be born seven and a half weeks early because my skull contained over one pound of fluid. I had a shunt placed in my brain when I was eight days old. I still have that same original shunt, thank God.
I stayed in the NICU for almost three months. During that time, they found out about my other brain problems, along with my liver. The doctors and nurses tried to prepare my Mom and Dad for the worst, but through God's amazing grace I have succeeded in proving them wrong.

I was only home for three days when I developed low blood sugar that caused me to go back to the hospital. The doctor found out that my pituitary gland did not function properly. I was put on growth hormone therapy for a year. I'm glad it was only a year because I had to have injections twice a day. However, it was better than having my blood sugars checked every three hours.

In April 1999 doctors inserted a feeding tube because I did not have good control of my muscles so I had difficulty swallowing. I consider myself lucky because I do not have to taste any of my medications.
In December of 2000 my liver was in trouble. My whole liver was hard like a rock and had caused major problems with my spleen and varicose veins in my esophagus. Because of my neurological problems, I was not a candidate for a liver transplant. But again through God's amazing grace, the power of prayer and a drug name Actigall, my liver today is doing very well, but the damage to my spleen is permanent.

In February 2001 I had two major surgeries. I had to have a tracheotomy because the muscle in my neck is too weak. I had continual respiratory infections for which I was hospitalized ten times in one year.
Then I had a laminectomy to relieve the pressure in the back of my brain and had to spend the whole month in the hospital.


My parents always knew I could see. Most of my doctors told my mom because of my extensive brain damage that I was cortically blind. Because of my hypotonia I also have really bad ptosis.In September of 2003, we found a doctor that agreed with my parents and he did a Frontalis sling on both my eyes.

My Mom put a mirror in my bed so I could look at myself. Then she noticed I was smiling. When she looked into the mirror at my view, she saw the TV and realized I was smiling at the Wiggles show. From that day, my parents put a five-foot tall mirror along my bed so I could see the TV no matter which way I face. I am glad my parents bugged the doctors about me because I love to watch all the colors.

As of 2008 I have had a total of thirty-six hospital stays. I do not know the difference between Monday or Tuesday, black or white but I know that I love everyone, and everyone that meets me loves me. I enjoy listening to words with the letter "p" because they make me laugh. I like being called all kind of nicknames, including Spider Boy and Jelly Belly. I like it when someone counts to ten in all types of different languages.

My mom says that I look the best in the color red. I love to sit on my mom's lap. Even though I am big, she says she will hold me as long as I want. My Mom and Dad really love me. My favorite songs are Jingle Bells and Jesus Loves the Little Children. I am considered a quadriplegic, but when people play with me I kick my legs like a donkey because I get so excited.

That is most of my story up till now. My Dad loves me very much and I look a lot like him. My Mom loves me too but she has a bad back. It is very hard for her to lift me, but she does it anyway. I am at the age and weight now that we need a handicapped van. They are very expensive and we cannot afford to buy one. I am hoping that this site will help with that. We are asking for your donations to help us buy the van we need.

God Bless all of you that read my story. My mom wrote it through my eyes. I love my life. God has blessed my family with many things. When you live a life like ours, every little thing is appreciated.

My mom doe not like it when she tells people about me and the first thing they say is that they are sorry. She says, "Do not be sorry, because I am not for one day of Andrews’s life. My son adores me and has unconditional love for his parents. We praise God for each little thing and remind people that no matter how bad things are, it can always be worse."