Miracle Marley
In most health people, we are creating fluid in our brains 24/7. This fluid helps to cushion our brains, and it is contained within balloon-like structures in our brains called "ventricles." There are two main ventricles, in addition to a third and fourth, that lie parallel to one another. Normally, this fluid, cerebral-spinal fluid, or CSF, is reabsorbed by our bodies through a system in which it flows into the lower ventricles and into the spinal column. In Marley's anatomy, there is a stenosis, or blockage. If you can imagine putting a balloon over a water faucet and turning it on, you can imagine that is what was happening inside of Marley's brain while she was in the womb. The fluid, trapped and no where to go, was crushing her brain and pushing the brain tissue to the sides of her skull.
We were told by doctors that she would likely not walk, talk, feed herself, or have the ability to form relationships. The specialists, maternal-fetal-medicine doctors, attempted to set us up with palliative care while I was still pregnant. I refused. I didn't see the point in it when she wasn't even here yet!
At 36 weeks, doctors took a sample of amniotic fluid to see if Marley's lungs were ready enough to breath oxygen. She was born 12/7/2010. Marley was less than a day old when she underwent brain surgery to place a shunt to start the process of draining the pressure and excess fluid off her brain. Her shunt is located in one of the enlarged ventricles. It starts at the top of her head and travels behind her left ear where there is a magnetic valve used to control the flow. The tubing empties into her abdomen to provide an alternate means for her body to reabsorb her CSF. She will always need to rely on this shunt to function properly.
I could write a lot more about our story, but it would turn into a novel. Marley is quite amazing. She loves going on adventures with her girl scout troop, playing the trombone in her middle school concert band, she loves to read and visit the local library, and she absolutely loves Taylor Swift.
If not for the team at Levine Children's Hospital, our specialists at Duke, her early intervention team, her physical and occupational therapists, and everyone who has helped her along the way, she would certainly not be where she is today.
Please consider donating towards a cure for hydrocephalus.
Why do I WALK?
I believe no infant, child, or adult should live in constant fear of needing yet another brain surgery.
I believe that every person who joins the fight against hydrocephalus can have a lasting impact in the lives of every person diagnosed, today and in the future.
I believe that every dollar we raise for research will have a ripple effect and could be THE dollar that changes everything for a family affected by hydrocephalus.
As you may know, anyone at any age can develop hydrocephalus, a life-altering, life-threatening condition caused by an abnormal accumulation of cerebrospinal fluid (CSF), resulting in pressure on the brain. The most common treatment for this condition is brain surgery to implant a medical device called a shunt. Sadly, a shunt is not a cure, as device failures are very common and lead to multiple brain surgeries over a patient’s lifetime, in some cases 100 or more.
Data Entry Division, 9249 S. Broadway, #200-845, Highlands Ranch, CO 80129
If you think this page contains objectionable content, please inform the system administrator.