A friend of ours connected us to another family who has a son with hydrocephalus and they live in the same city. A fundraising event brought us to meet them which I am eager to help out with - so nice and reassuring to see a this amazing boy who is several years older than Morgan doing so well and he also has 2 shunts. We met his family and since I have only spoken with a handful of other hydrocephalus parents or people I was interested to hear their situation and his medical and surgical past.
We were talking for a bit and then I asked his mother when was his last shunt revision. Immediately after the words came out of my mouth I realized this was probably the worst question I could have asked...I watched her sort of freeze up and then look for a piece of wood to knock on before she answered. Ultimately I don't think she ever answered and I didn't want her to. I realized that this is exactly what brought us together to raise awareness and money for hydrocephalus treatments. With Hydrocephalus and shunts, its not about how long a shunt lasts its about the fact that it can stop working at any time. Our kids might outgrow the coiled up tubing in their stomach, the valve might break, a cyst or scar tissue might form at the end of the tubing, they could get an infection or maybe 1 of their 2 shunts just stops working. You live with this constant fear, not knowing if you should travel away from your neurosurgeon, over analyzing everything your child does (or doesn't do) and how they are acting, and you carry a disc in your diaper bag with your child's brain scans on it "just in case". We share this feeling that probably most people will never understand and I never wish upon another parent. We both wake up everyday and pray that today will not be the day that we are frantically running our sick, lifeless child into the emergency room for another shunt revision.
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.
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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