My Journey with hydrocephalus and Cerebral Palsy

Morgan Grace was born 3 1/2 months early on Aug, 21, 2012 weighing just 1 lb 7 oz and 13 inches long. Morgan was hospitalized at Children's Hospital NICU in Minneapolis, MN for 108 long days. During this time she encountered many medical challenges common to "micro preemies" but most devastating was to hear she had suffered from grade III/IV Intraventricular hemorrhage (IVH / brain bleed). We were told she may never walk or talk and they would not be able to tell the severity of the damage until she is older. The IVH resulted in Hydrocephalus, a condition she will have for life. At two, Morgan was also diagnosed with Cerebral Palsy.

I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.


From Wikipedia, the free encyclopedia:

Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.

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Saturday, December 28, 2013

surgery

Today Morgan had surgery to "link" a tube from her current shunt (placed on the front right side of her head) to her 4th ventricle.  The surgery was a success and everything appears to be working as it should.  This procedure was shorter than her revision and less invasive since they use a scope to complete it and they did not need to make an incision in her stomach since that part of the shunt was untouched. 

Of course they shaved off a good portion of her beautiful blonde hair again- makes me sad to see and obviously the least of our worries but still can't help but think about what if this happens when she is in high school or right before pictures or homecoming/prom or some important event to her- will likely be devastating.  Thankfully her hair grows fast and we find cute headbands!

She slept most of the evening and seemed like she was doing well with little pain.  I hope she has a fast recovery like last surgery so we don't have to spend too many evenings at the hospital. 

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