Do you know that more than 6,000 babies born this year will face a lifetime with the challenges from hydrocephalus? And that hydrocephalus is number one reason for brain surgery among children? That anyone, at any time, can be diagnosed with hydrocephalus? At this time there is no prevention and there is no cure.
When Emma was diagnosed with hydrocephalus – an abnormal accumulation of cerebral spinal fluid (CSF) in the brain – at 20 weeks in utero, I was terrified! I had no idea what hydrocephalus was and what sort of future my daughter faced. Born weighing nearly 10.5 pounds, Emma’s life was very “touch and go” for the first month until she came home from the Neonatal Intensive Care Unit (NICU). At a mere day and a half old, she underwent brain surgery to save her life – the placement of her shunt. The shunt allowed the 1.5 pounds of excess CSF to drain out of her head. Each day brought a new challenge on my tiny, fragile baby girl. Although the doctors and nurses performed heroically during that time, I felt very alone. We never would have made it without the love and support of family and friends …and the information and support we received from the Hydrocephalus Association (HA).
If you are unfamiliar with the organization, the stated mission of the Hydrocephalus Association is "To eliminate the challenges of hydrocephalus by stimulating innovative research and providing support, education and advocacy." Currently, Emma is doing well – to date her shunt has worked so well that I occasionally have moments where I don’t worry. But I never forget that currently, there is no cure. While she hasn’t suffered any problems with her shunt yet – I know it is only a matter of time given more than 50% of shunts fail in two years. The challenge now is to always stay alert to any change because the symptoms of shunt malfunction mimic the flu or other diseases – while the flu isn’t great it’s infinitely preferable to a shunt infection or shunt malfunction! Unfortunately, life-threatening complications can develop in a heartbeat, keeping me extremely watchful for the tiniest change in her behavior.
While I continue to be grateful for the many doctors, nurses and therapists that have helped Emma, there still is no cure for hydrocephalus. The shunt is at best a temporary treatment for life threatening condition that requires numerous unplanned brain surgeries to stay alive. Emma has had 3 hydrocephalus related surgeries so far – the same number of birthdays she has celebrated. I also know that Emma is fortunate. So many others with hydrocephalus that we have come to know, have dealt with so much more than she has (people younger than me having well over 100 surgeries). With a little more research we may be able to change this. That is why this year we are walking again to raise money and awareness for the Hydrocephalus Association; especially for those who have it worse than Emma, because there is no cure….and there should be.
In 2009, the Hydrocephalus Association launched a research initiative to learn more about this chronic and challenging condition. Since then HA has committed over $3 million to research – making it the largest non-profit, non-governmental funder of hydrocephalus research in the U.S. That is why Emma and I will again be participating in the HA WALK on September 27th here in Frisco, TX. Last year our team, Team Emma Lee, raised over $1,350 thanks to your support! We were incredibly gratified by the generosity shown by our family and friends and very appreciative of your support. Thank you so much. Our goal for this year is $1,328 (the number of days old Emma will be on the day of the WALK) and we hope that you will, once again, support her team with a tax-deductible contribution. Donations of any size are gratefully received.
For obvious reasons, I feel this is a very worthwhile cause. Your donation will support critical research and program services so that my daughter, and more than one million other Americans living with the challenges of this complicated and complex condition, can lead a better life.
You can track our progress – and donate – online HERE – or go to www.hydroassoc.org, click on WALK, and choose the DFW WALK (Sept. 27) from the Schedule of WALKs. Then “Support a Walker.” It’s quick and easy!
Thank you for being a part of our lives! Your support and love makes the difference.
Much love and gratitude,
Megan and Emma
P.S. Please feel free to e-mail or forward this to anyone! The more people who know about hydrocephalus, the better!
