May 17th, 2014- The Realization & The Run

I was getting excited for the coming weekend- to see my family again, and to do Carter's Run together.  Thursday night after the boys were in bed I was on Facebook, browsing my newsfeed.  I saw a post from someone in our Dandy Walker parents group (a closed group) where they had posted pictures of their child and how blessed they were by them.  (I believe it was a newborn, we did the same on the group page when Ally was born to introduce her to the 'Dandy-Walker world.') 

What struck me, however, was something that I've seen many MANY parents in this group post, but for some reason at that time it hit me like a ton of bricks: 'I'm so glad I didn't listen to the doctors when they recommended I terminate.'

I'd had enough.  It was the final straw.  I was so SICK of seeing parents post similar statements on Facebook, underneath pictures and videos of their smiling children.  Doctors are recommending termination of dandy walker pregnancies across the country, telling parents their children will be 'vegetables' or have 'no quality of life'.  Obviously, if a person was missing a part of their brain you would think that they would have some severe issues- myself, not being from a healthcare or medical background, might have thought before this that if part of your brain was missing you would not be able to even survive.  However, this could not be further from the truth- and these are DOCTORS telling this to parents.  So many Dandy-Walker kids defy their diagnosis daily and grow up to be well-functioning adults.  Of course, every case it is different, and some are more severe than others (especially if paired with a genetic abnormality, which Ally does not have), as we were told early on in Ally's diagnosis and have seen firsthand since- but 'no quality of life'?  What a lie!  It made me sad- these parents on Facebook had chosen life, but how many more had been terminated that could have had fairly normal (if not completely normal) lives?

I sent a message to Eric Cole, the founder of the Dandy-Walker Alliance, with my frustration and outrage.  He responded that this was exactly why the Alliance was formed, (I finally understood why the car magnet says "A life worth saving" on it) and would I happen to be attending Carter's Run since I was in the same state?  When I told him we would, he said to come to the Dandy-Walker Alliance tent to meet him and some of the Dandy-Walker kids. I was excited to realize that for the first time I was going to get to meet other kids living with Dandy-Walker and talk with their parents.  That night I also sent a message to Carter's Mom, Lisa, via the Carter's Run Facebook page to let her know we were going to be there and that we would like to meet them, but we knew they would probably be really busy during the event.

Russell has been gung-ho about wanting to raise money for the Alliance to use for its projects.  But that is the furthest thing from my mind now.  Not to sound completely pessimistic, but I don't believe we will ever find a 'cure' for Dandy-Walker.  I could be wrong, but if there ever is one I don't believe it will be found in my lifetime, or even Ally's.  How do you 'cure' a developing fetus from not having a fully developed brain?  How could a brain transplant be possible- or even a partial brain transplant (of the cerebellum)?  Maybe one day this will be possible, but for now I don't have a lot of enthusiasm about the possibility.

My mission is education- I am an educator by profession, after all.  People have to know what Dandy-Walker is, and that it is NOT a death sentence, or a 'no quality of life' sentence.  And while a lot of that can be done by parents of Dandy-Walker children (and Dandy-Walker adults) with the help of the Alliance, my belief is a lot of it must also come from within the medical community itself.

As mentioned in some of our earliest posts, our doctor at Maternal Fetal Medicine was excellent.  She did not sugarcoat anything, but she also didn't leave us without hope.  And she helped us systematically eliminate possibilities (the infection, genetic abnormalities) with testing (first blood tests, then the amniocentesis with SNP array, along with a fetal echocardiogram and fetal MRI) but always gave us all the options with full details about each.  Termination was only brought up twice- once with the initial consult with the genetic counselor where she gave that as an option and we said no way (and she never brought it up again) and then with our doctor when she told us that if any of our testing showed an issue with Ally that would cause her not to survive, (or survive for long, such as Trisomy 13 or 18) she would do everything to make sure I was fully protected during the birth process and termination may be an option with that.  It was NEVER pushed on us, and we were NEVER made to feel we were in a hopeless situation.  In fact, they directed us to the Alliance and to local support groups for special needs families as well.  They always made sure we were fully informed and were open to questions anytime.  EVERY PARENT needs to have the same care and concern we did- with ACCURATE information about their child's diagnosis and condition.

My hope is to get in touch with our doctor and ask her to help us figure out how to get the word out to the medical community about the truth of Dandy-Walker.  I'm really not sure what that looks like, but I'm hoping she can help out and give me some ideas.  The Alliance has put together a great brochure for genetic counselors and doctors to give to families when they first get the diagnosis that is full of good information and encouragement and is very easy to understand.  If we can get that out across the country to the people that need it- doctors and new DW families- that will go a long way in stopping unnecssary terminations of DW pregnancies.  Educating the medical community is my first and ultimate goal.

My second goal is to partner with the Alliance to create even more resources for families, especially newly diagnosed families.  I am hoping to find a few 'point families' in every state (with the help of the Facebook group) that the Alliance and doctors can list and provide for new families so they have someone close by to get in touch with and talk with when necessary and would be familiar with doctors and services in their state.  Another Mom on the Dandy-Walker parents group was asking for the links to all the blogs like mine to link to hers- I'm hoping we can actually ask all families with blogs to send the links to the Alliance so they can have a whole page with them for families to have a reference for life with Dandy-Walker and read messages of hope and encouragement (hopefully, also listed by state). 

I was greatly encouraged Saturday at Carter's Run.  My family had a great time at the event.  Everyone except Dad, Luke, and my youngest nephew walked the 5K (well, Ally and Ben were pushed) and my brother even ran part of it.  Afterward Luke did the 1K fun run with me (whining almost the whole way, but he did it).  When all the racing was over, the boys went to watch the magician at the fun fest and I went with Ally to the Alliance tent to meet Eric Cole, his wife Andrea, and their son Ryan, age 9, who wears glasses and a huge smile and uses the aid of a service dog.  We also met Noah, age 2, who has a shunt but otherwise has developed normally and on schedule; Shawn, age 6, who walks with the aid of braces and who thought Ally was SO cute :-), and Carissa, age 24, who was shunted at 10 (and has never had a revision!) and lives under her mother's care.  I really enjoyed hearing from the other families about their children and the journey they have been on, and being able to get advice from them as Ally has barely started her own journey!  I unfortunately did not get a lot of pictures while at the tent, but here are some pictures from our day.  (Sorry, some of them are sideways and I can't get them to turn!)

 Mom, Luke, and my nephew warming up.

 Ben is ready to race!

 My brother and sister-in-law warming up

Waiting to start!

 The Great Zucchini!

 The 1K Fun Run...at least he looks happy at the finish!

Can I tell you the best part of the run?  I was pushing Ally the last leg of the course.  There were 2 women walking a few paces in front of me.  The course wound through a neighborhood and came out onto a street with some shops.  A man was going into a nearby building and I guess saw all the people walking and the course being protected by local police and asked the 2 women what cause were we walking for?  They replied, "For Dandy-Walker syndrome."  He asked what that was, and they couldn't really give him an answer.  I slowed down and said I could tell him about it.  I explained in about 20 seconds the best I could- that Dandy-Walker is a brain malformation where part of the brain is missing in the back, the cerebellum.  Often because of this gap it results in hydrocephalus.  Children with Dandy-Walker may show no signs of having it, or may have developmental delays or issues with motor skills and mental or learning issues, among other things; it is a large spectrum of possibilities.  He said, "Thanks, I'll have to look it up at home."  I told him to go to www.dandy-walker.org, and continued down the course.

And that, my friends, was well worth 3.1 miles.  

Ally and I finished together a few minutes later, running the last bit, in about 45 minutes.  The culmination of the beginning of a journey for me, as Ally continues hers.