Howdy Hydrocephalus

Understanding my unique gyroscope

ultra sound – double edged sword

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Ultrasound is a gift at letting you see your baby grow and progress during the pregnancy. Generally a parent-to-be is never concerned about the ultrasound because the pregnancy is normal. However, an ultrasound can also be a double-edged sword letting Doctor’s and parents know of potential concerns that most parents including me never even thought about.

To be told that your soon to be born child may have a potentially life threatening or debilitating issue can send parents into the black abyss of unknown and fear. It only takes a few moments of reading on parent discussion boards, Facebook pages to feel their fear and uncertainty of their future and the future of their families and soon to be born child.

Like a lot of news and televisions shows, the scary gloom and doom pitch is apparent on many of these sites. There are parents who tell their story of their children that have not survived and opted to terminate any male pregnancies after. There are plenty of stories sharing the severe mental and physical disabilities that their child has after they were born. This just adds more emotional fuel to the already tense situation. I don’t recommend reading any of the parent discussion boards or chat rooms, but instead turn to the medical sites or ask your team of medical professionals to provide information and answer your questions.

Basically there is no definite cause for Hydrocephalus but there is some hint that chromosomal and genetic abnormality that may be the cause use unless hydrocephalus developed due to a trauma or external factor such as an infection or spinal bifida.

I know that the first time I was told I had hydrocephalus, an image of a baby with a very head popped into my head. The large head or the rapid onset of a large head is definitely a tell tale sign of hydrocephalus in a newborn or infant.

There are two treatment options for newborns and infants: One is shunting where a tube is placed in the brain. This tube re-directs the CSF into the belly where it is re-absorbed. Endoscopic third ventriculostomy (ETV) can be done as well. Both have very good success at drain CSF and manage hydrocephalus. Babies can be shunted the day of birth or within a few days of being born. A child older than six months old may experience an ETV surgery instead.

Although the there is no cure, the treatment is early, it can be successful. A child may experience a large spectrum of motor or learning challenges but many children can show none of these challenges living a normal lifespan with normal intelligence. The only thing that is required with the treatment is the continued follow-up care to treat any infections, shunt blockages, ETV hole closure or shunt revisions.

The biggest thing is when you leave Children’s Hospital is to educate your GP and local hospital on the symptoms of infection and shunt malfunction. This is where you need to advocate for your child in an over protective parent way. If you suspect something is wrong – there most likely is something wrong.

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