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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Thursday, October 27, 2022

Post Op

Surgery went great. Her surgeon said they did not have to do the muscle lengthening which is a good thing. This is something they assess during surgery after they rotate the bone depending how the muscle looks and if more length needed but they try not to do it because it weakens the muscle and recovery/getting strength back takes longer.  Hoping with  casting over the next month flexing her foot it will keep it stretched and help prevent further toe walking. 

She has a plate/pins in and casted for about a month. They left slits on the sides of her cast to allow for swelling and depending on how it looks in the morning they will close/ wrap it either here before discharge or come back in a few days.  

She was quite entertaining coming out of anesthesia and the first thing she said to us was “I need to get some pants on and get up to my room, I have visitors coming”. We are just relaxing now, she ate some food and trying to manager her pain.




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