The Meeting

I found this article on ‘The Mighty’ and thought I would repost it. This is how it feels to be fighting everyday for what your child deserves! It can wear you down, but you still have put those gloves back on and get in the ring.

Monkey Business

The tension in the room was palpable.  We both came to the table with a chip on our shoulder; You because I was questioning too much and Me because I didn’t like your answers.

The problem is that we come from different sides of the track you and I.  You are all about the purse strings, while I am all about the heart strings.  You see my son as a burden while I see him as a blessing. You see him as an adult who is a  fiscal drain on your limited funds while I see him as my baby boy who is as deserving as the next.  You are all about the quantity while I am all about the quality.

You see me as irrational while I see you as un-emotional.  You feel I am asking for too much, that my expectations are too lofty.  You try to convince…

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I had the privilege of attending and speaking at a monthly meeting of Los Angeles Hydrocephalus Association Support Network.  There were parents with their babies and children of school age.  Then there were teenagers attempting to live a ‘normal’ life.  The adults were there too.  Everybody in this group was special and had their own story to tell.  Hydrocephalus is a misunderstood condition.  So, today I am hoping that I can deliver some much-needed information.

We have all heard hydrocephalus referred to as ‘water on the brain.’  When broken down, the words in Greek are ‘hydro’ meaning ‘water’ and ‘cephalus’ meaning ‘head.’   The clear fluid called ‘cerebrospinal fluid’ (CSF) is produced inside the spaces within the brain called ventricles and surrounds the brain and spinal cord.the surface of the brain and down the spinal cord before being absorbed into the bloodstream.  The fluid delivers nutrients to the brain and spinal cord and removes waste products.  It also acts as a cushion (shock absorber) to protect the brain and spinal cord. The fluid also is between the cranium and spine to accommodate  for changes in the amount of blood within the brain.

Hydrocephalus is when children have too much CSF in the ventricles of their brain and the ventricles get bigger and start to cause problems.  There are three main causes of excess fluid:  The most common is a partial obstruction between ventricles or among the ventricles and other areas of the brain, Poor Absorption often caused by inflammation from diseases and injuries, Overproduction is rare and occurs when the body produces more CSF than it can absorb.  The fluid continues to be made by the brain and the build-up causes pressure to rise in the brain. If the pressure continues to build without treatment, eventually the brain will be damaged.

There are two types of hydrocephalus. The first type is congenital and is present at birth.  Congenital Hydrocephalus is caused by an imbalance between how much fluid the brain makes and how well the body is able to process it.  It may occur because of bleeding in the fetus before birth, infection in the mother such as toxoplasmosis or syphilis,  birth defects like spina bifida, or a genetic defect.  Congenital Hydrocephalus may be identified by a larger than normal head circumference in the newborn or within the first few months of life.  It will grow faster than is the normal rate for a baby’s height and weight.  The infant’s soft spot (Fontanelle) may feel firm or bulge out.  Or the areas between the skull bones (Sutures) may be larger than normal.  The child may be irritable, sleep too much, or begin vomiting due to the increasing pressure.  Diagnosing the condition early and treating it quickly will help limit any long-term problems.  The long-term effects depend mostly on what caused the fluid buildup in the brain, how bad it gets, and how the baby responds to treatment.

The next type of hydrocephalus is called ‘Acquired.’  It may develop at the time of birth or at some time afterward caused by brain hemorrhage, a traumatic brain injury, tumors, cysts or infections such as meningitis.  Premature babies are at greater risk for brain hemorrhages which can lead to acquired hydrocephalus.

The most common treatment for hydrocephalus is the placement of a shunt, a flexible plastic tube, about 1/8 inch in diameter, with a valve that controls the flow of cerebrospinal fluid draining from the ventricles of the brain to another part of the child’s body, approximately one pint per day.  Normal pressure should be established in the brain.  The shunt has three parts:  A tube that goes into the ventricle where fluid is building up, a valve that controls how much fluid drains out and controls the pressure in the child’s brain and keeps fluid flowing away from the brain, and another tube that comes from the valve and goes into the abdomen in most cases called a ventriculoperitoneal shunt, or into the upper chamber of the heart called the’ Atrium,’ or into the lining of the lung instead.

This is a life long condition for these children and are often in the hospital, the ER, doctors’ offices or more surgeries.  There are complications with the shunt due to an obstruction in the shunt, an infection of the shunt, or excess drainage that may happen when the child stands up.  th


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