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 27thhere 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!
While Emma has been learning her colors for some time now, she is just now getting to a point where it is a game to her to show me she knows them. She will request to do so by saying "colors" to me, and when we start playing, she will prompt me to ask her to find a color. I love how enthusiastic she is about showing me she knows them and how proud of herself she is when she does. You can tell that she is used to hearing people tell her she is doing a good job too because she tells me she is doing so when she locates a color I've asked for. Here's a short video of her playing in her ball pit while showing me she knows her colors from this past weekend. Can't help but smile.
While this post isn't really an update on Emma, it is important to know that a resource like this exists to support both Emma, me, and others in our journeys. This was my first year to attend the bi-annual conference put on by the Hydrocephalus Association. This year it was in Portland, Oregon, a place I had never had the pleasure of visiting before. Sadly, Emma did not go with me this year as the conference was during her first week of summer visitation with my ex. But, it was nice for me to take a vacation without Emma and have my first real "break" since she was born. I missed her terribly and worried a little at times, but I gained so much from going. I hope to take Emma with me to future conferences so she can also meet some of the wonderful people, including children also living with hydrocephalus. The age range was as far stretching as the challenges they lived with - from younger than her all the way up to those living with Normal Pressure Hydrocephalus (NPH) that were in their eighties. They split the kids up based on age and took them on field trips and watched them while the parents went to sessions to learn about the latest research and treatment improvements as well as how to plan for the future (school, transition, adulthood, independence, and finances). It will be a wonderful experience for Emma as she grows up to see she has peers she can relate to and lean on for support and encouragement when she wants it, as well as mentors to look up to and aspire to be like.
The conference started on Wednesday afternoon, but I arrived in town on Monday to have a little mini vacation prior to the event. I visited several beautiful places and, of course, the cheese factory in Tillamook. My camera is full of some wonderful memories. But that was only the beginning of the adventure.
After an introductory keynote speaker, Wednesday afternoon was spent in small interpersonal break out groups based on your relationship to hydrocephalus. I was in the group of mothers with children age zero to four that had hydrocephalus. While we had several similarities to our stories, they were still all very different and a reminder that no case is the same. After exchanging contact info with everyone in that group at the end of the session, I needed some time to emotional decompress before getting dinner.
Thursday and Friday were packed full of sessions and there were so many to choose from that I had a hard time deciding at times. After the keynote, I attended the "ask the experts" session for parents of children with hydrocephalus ages zero to four. There was a pediatric neurosurgeon there that was answering any questions the parents wanted to ask for an hour and a half. I had been wanting to ask questions about the Endoscopic Third Ventriculostomy (ETV) surgery that is the other option for treating hydrocephalus. Instead of putting a shunt in to act as a drain, they create a hole to drain in the third ventricle that bypasses the blockage where Emma's problem is. While her type of blockage is one that is deemed a candidate for the ETV surgery, they don't typically do it in children at birth as the success rate is very low. But in children over two years old, the success rate is high enough that most will try it. That made me want to attend other sessions on this option. After talking to this neurosurgeon, I understood that there were risks for Emma that could make the attempt to try to live "shunt-free" fail. Another neurosurgeon explained it well in a different session - he said that when you open an expressway, the side streets aren't utilized as much and therefor the maintenance to keep them fully functional goes down. Same idea with a shunt. By putting in a shunt, the brain's ability to reabsorb the the cerebrospinal fluid (CSF) naturally diminishes. The ETV is rarely a good enough drain to accommodate the amount of fluid the shunt is capable of which requires the "side streets" to still be functional. In most cases, once they have been closed for over a year, they rarely reopen.
After lunch on Thursday, one of the sessions I attended was about endocrinology. Many children with hydrocephalus have issues with hormones and I wanted to learn more about what to watch for since her developmental pediatrician had mentioned it was something to be mindful of in the future. After that, I attended a session on Individualized Education Programs (IEPs) since Emma had started school this past February. While I went to college to be a middle school math teacher, I wanted to know what others had experienced coming from the opposite side of the table. What worked best, what they struggled with, and how they continued to advocate for their child.
Friday was a wonderful day as well. I attended sessions all day and ended with a conference dinner, dance, and talent show. I loved seeing all the children with hydrocephalus and their siblings do numbers together and couldn't help but think about how that could be Emma one day soon. At one point, I saw one of my WALK Chair mentors dancing by herself between some tables. When I asked her what she was doing, she told me about a touching story of how that song and dance was special to her because she used to do it with her parents before they passed. Naturally, I joined in because I was so touched by her story. It was a testament to the types of people that were there and how amazing they all were. I can not wait for the one in 2016!
