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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Friday, March 13, 2020

1 year post op - SDR

Back dated writing to catch up!  A year ago today (March 13th) Morgan underwent selective dorsal rhizotomy surgery at Gillette Children's in St Paul MN.  We went into that procedure somewhat hesitant and weren't sure what kind of gains she would see from it but hoped for the best and felt we had to proceed for preventative reasons, and understood the long, tough rehabilitation period to follow.  Although Morgan was probably higher functioning than many of the children that undergo this surgery who often see miraculous results, unfortunately I would be lying if I said I was completely satisfied with the results for her.     

The surgery itself was successful, she healed quickly and I think she was back to baseline within 6 months.  The tone (spasticity) in her right foot is definitely gone, which was the goal!  I think we hoped with the spasticity gone she would be able to increase her strength and build her right calf and thigh muscles up to improve her walking, gait, running, jumping, etc.  Unfortunately we do still see her toe walking on that right side without her AFO on, I think this is somewhat out of habit and also because her muscle length and strength just aren't there. We are also now seeing more external foot progression angle on that right side than we did before the surgery.  She is just starting to be able to climb our front stairs unassisted (slow and wobbly but can do it if not carrying anything!), still not running or jumping for the most part.   

On March 3, we had her 1 year post op appointment at Gillette with Orthopedics and PMR.  They reviewed the gait lab analysis with us and took X rays of her legs.  From her Orthopedic clinical notes, the imaging shows a 1.5-cm limb length discrepancy, right shorter than left and bilateral genu valgum (knock-knees), right greater than left.  She has right side femoral anteversion (inward twisting) and external tibial torsion (rotated outward) aka bone deformities.  The definitive intervention for torsional abnormalities is a procedure called derotational osteotomy.  The external tibial torsion, her most marked abnormality, will remain the same or become progressively more external over time and eventually she will need to have this surgery done :(
We discussed this procedure a bit and the typical age range which ideally is done around 8 yrs old and decided to wait for follow up one year from now to make any decisions around this.  

With her PMR doctor we reviewed much of the same but also her growth (potentially some mild widening on her height curve) which we need to continue to monitor and speak to her pediatrician about.  The girl can eat but she is little- height and weight!  We also discussed serial casting her right leg again due to her ankle contracture, or potentially discussing a course of Lokomat use at Gillette again to help improve her gait pattern (the machine we used while inpatient).  I didn't jump on the serial casting appointment because of upcoming Spring Break but will potentially look to schedule something this spring before summer swimming and see if we can make additional PT sessions with Lokomat work!  

So a bit of disappointing news today but will continue to work on what we can and address everything next year.  Here is her 2019 (left) vs 2020 (right) gait lab walking video so you can see the before and after.


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