Dx Hydrocephalus: George Success Story
Little George had a rough start but he is making up for lost time
Mother tells his story
A handsome little boy with a big mountain to climb
George was born full term after a normal pregnancy. He was delivered by C-section after medication failed to begin labor. He tested 9 and 9 on his Apgar Tests. He fed relatively well and he was sent home as normal.
Baby George needed to have brain surgery three times in the first seven months of his life
But, his head was growing too fast and at 3 weeks old he had an ultrasound. This showed a Grade IV bleed in the right hemisphere which could affect vision, movement and speech. He had his first brain surgery at 4 weeks of age. He was fitted with a Rickman’s reservoir on the top of his head. This reduced the hydrocephaly by permitting the removal of excess fluid from his ventricles.
Hydrocephaly, Nystagmus and a Strabismus
We stayed in the hospital and he had the excess fluid removed every other day. After a month, he had a second piece of brain surgery to install a shunt. At 7 months he had his third brain surgery to change the shunt.
George’s official diagnoses were hydrocephaly, cerebral palsy, nystagmus, and strabismus. In the first seven months of his life George did nothing. We had read the book “What to Do About Your Brain-Injured Child” but hadn’t been for a visit yet. We saw a physical therapist three times a week. The baby couldn’t look us in the eye, or pay attention to anything except light up toys. He could move his arms and legs but he could not move forward or backward.
For George there was no place to go but up
After 7 months, we tried harder to get George to do tummy time but to no avail. We did all the things the physical therapist told us to do but the baby was barely improving. His eyes were constantly moving all over the place because of his nystagmus. He began banging his head fiercely on the ground due to the frustration of not being able to move.
George’s future looked grim.
After being given his diagnosis, we were shocked, devastated, and then shocked again. We were very well prepared for our pregnancy, we ate organic and took all the right pre-natal things for 12 months before we conceived. We exercised and did everything we could to have a healthy pregnancy. But, these things can happen to anyone, at any time, no matter how prepared they are.
The best thing to do is deal with it.
George about to begin on a whole new journey
The first time I had real hope for his future
Having said that, it is not an easy road by any means – it is very hard work. When George was 15 months old, we travelled from Australia to Philadelphia for the first time and attended The What To Do About Your brain-injured Child course. It was the first time, the very FIRST time I had anyone tell me that George is intelligent and his brain can grow by use. It was the first time I had real hope for his future, that maybe he would see the world around him. We also met a Dad there who had a little boy similar to George who had started the intensive program a few months before. He told us of his son’s success and it was very inspirational for us. So we thought we’d try it for 6 months properly.
15 months later we’re still going!
We started The Intensive Treatment Program (our first program was the most difficult for us) and in 6 months he began to crawl and to read single words.
George in motion for the first time
In another 6 months he could hold the quad position and read simple homemade books (my child with a nystagmus - eyes moving all around the place). In another 6 months, he was creeping on his hands and knees and he could understand everything we said to him. He was reading years above his age level.
He is up and creeping all over the house
Results: Standing, talking, reading and learning math
We have just returned home and he’s begun to pull up to a standing position and he is cruising along the couch. He has also begun to talk! He can count to 20, he can name his colours, and now most of the time he asks for what he wants. He has begun a math program now and is enjoying it and doing very well.
One of many books that George loves to read – clearly vision is not his biggest problem anymore.
In 15 months, George has achieved so much. We are exhausted but it’s a wonderful exhausted. A satisfied exhausted! He’s surpassed his peers in intelligence and he’s catching up to them in mobility.
“Stimulate your child because the brain grows by use”
It is incredibly difficult when your child’s eyes don’t work, when he can’t look at you, when he can’t see, it is a new level of heartache. These things DO NOT improve when you wait and see. They do not improve when you don’t work at it every single day. Your child has only you, you must step up and do everything possible to correctly stimulate your child because the brain grows by use.
In our experience doctors, specialists, even family and friends don’t expect much from a child whose vision is abnormal.
They only see a poor hurt boy.
My advice to other parents with a child who needs help is start today, read the book, get to the course and put your child on the floor to move. When you teach that “poor hurt boy” to read and do maths, you’ve changed his future and how people look at him.
George beginning to walk under the overhead ladder - he looks like a different boy - because he is a different boy.
I feel cautiously optimistic about George’s future. We still have a long way to go and a lot of work ahead of us but we feel far more positive than we did 15 months ago.