Wednesday, November 16, 2011

Fetal Hydrocephalus Dot Com

Still waiting on the official results from yesterday's glucose test.  While we wait, I have a VERY special hydro interview to share.  I hope you take the time to read it.

For many of us hydro parents, the first time we hear the word "hydrocephalus" is during a routine ultrasound.  As you've probably noticed in the hydro parent interviews, most of us leave the appointment feeling shocked, overwhelmed, and desperate for answers.  And where's the best place to look for quick answers?  Dr. Google.  Let me tell you, there is a lot of scary stuff out there on hydrocephalus.  But, thankfully, one of the first website that pops up in a search of "fetal hydrocephalus" is a website filled with quality information, practical tips, and lots of hope.  That website is, and today's interview is by it's creator, Michelle.  

It's hard to put the perfect descriptor to Michelle's role in the hydro community.  She's definitely a pioneer, a wealth of information, a leader, and a bit of a celebrity.  She's put a lot of time and energy into providing other hydro families with life changing information.  And she's also put a lot of effort into meeting other families and hearing their stories.  We haven't met yet, but I know we will someday.  And I am honored to feature her on my blog.  She writes about her fabulous family here.  And she's shared some of her story below:

Tell us about your family.  If your child has multiple diagnosis, feel free to share them.  We have two children.  Our oldest is our 9 year old daughter.  Owen is our youngest at 5 years old and he is the one with hydrocephalus.  He has aqueductal stenosis with a secondary Chiari.  He is deaf and has a cochlear implant.  He has seizures which keep him on meds and he has a Vagus Nerve Stimulator implanted for seizure control as well.  He cannot walk yet, though he can cruise on furniture and using a hand rail and he can crawl.  He only has about 2 verbal words and just a few signs. 

Tell us about the moment you were told your child had hydrocephalus.  We went in for a routine scan and they found that his ventricles were enlarged.  They rather foolishly told us the news right in front of our then year old daughter, so we couldn’t really fall apart then.  Once the doc was finished telling us and we were waiting for the amnio I had to have my husband take Sammy out of the room for a while so that I could lose it.  It was a rather rough day.

How has hydrocephalus affected your daily life?  Maybe give one "real life" example.  There is nothing that it hasn’t affected.  I have had to quit my job and I spend all day taking care of him.  He does no self care, so feeding, dressing, diapering, 10 therapies a week, etc take up all my time. 

Share a moment when you were frustrated or discouraged  Probably the worst was when they were wheeling him out at 1 day old for his shunt surgery and the nurse came in and stopped them and said his bloodwork had a problem and  they would have to put off the surgery for a few days.  More recently it would be watching him acquire about 13 words and a bunch of signs and then watching the seizures take them away.

Share a moment when you found joy or hope  Every time he giggles or hugs me.  Watching him hold onto the oven door and stand on his tiptoes to see onto the counter.  Every time we get even the tiniest progress towards a milestone it’s like we’ve just gone to Disneyland!

What do you do to keep your sanity?  How do you take a break?  The website has always been my biggest therapy.  Channeling what would otherwise be frustration into the energy to help educate and support others is the best way that I have found to stay sane.  I also knit, crochet and paint to give myself other outlets.  I highly recommend “yarn therapy” for all. 

What advice would you give to a family who has just received a new diagnosis of hydrocephalus?  Learn all you can, read the stories of other families, and then go on vacation.  Find other things to occupy your mind and time or you will go insane.  There isn’t anything you can do about it so just get on with things. 

How do you deal with difficult questions from onlookers?  Somewhere along the line I realized that I was smiling a lot more than I used to.  I was smiling at each and every person that walks past me, even when I’m in the hospital and having a really bad day.  I have found that it makes people feel more at ease.  It encourages them to ask questions, and I do want them to ask.  The worst thing is the quick look away that makes you realize that they are uncomfortable.  But a question means that they are curious, interested and wish to know something about my son.  I am not picky about how the question is worded.  I have only once had someone say something that was so obviously rude that I snapped back at them.  Everyone else has asked with kindness and caring.  The more open I am, the less that people will be afraid of what they don’t understand.  Even if they don’t ask a question, the smile tells them that it’s OK and there is nothing to be afraid of. 

What is one thing you wish families with typical situations realized about families dealing with special needs?  Just how all consuming it can be.  That we don’t get days off.  That the seizures can come 24 hours a day so we can’t just turn off the worry.  That you complaining about a bad day when your car won’t start probably won’t make the same impression on me that it would have before Owen.  If everyone is healthy then it isn’t a bad day. 

What is your dream getaway (either family, couple, or by yourself. . . or all three)?  Someplace I could sleep for as long as I wanted to without anyone waking me up J

What is your child's favorite toy/therapy tool?  His favorite toy is probably his bug book.  It’s a soft book that he’s had forever with bugs whose wings and antennae are sewed on pieces that he can play with.

What is your favorite coffee (or coffee alternative) drink?  Oregon Chai Tea Latte.  No question about it, I drink it every day. 

Your website on fetal hydrocephalus is one of the first stops many moms make on their google mania after receiving a diagnosis of hydrocephalus.  Why did you start the site?  When did you start it?  Any idea how many people have visited it?  And how many people have visited Duke because of it?   I started the site out of sheer frustration while I was pregnant with Owen.  I had been searching for information and I would find a tidbit here, a tidbit there and I would print out each bit.  I had a fairly large stack but it had taken me months of hard work to put together.  This was in the day before Facebook (can you believe that there was a time before Facebook?) and I couldn’t find anywhere to read actual stories of actual families.  I found one old fashioned list server where you could email questions and I had a few people answer back.  Only one was a Mom of a kid with congenital hydrocephalus.  She was great, and she even talked to me on the phone, but it was hard to get a real picture of daily life with hydrocephalus.

I had to stay on the couch quite a bit in the last few weeks of my pregnancy because of contractions, and I am not a person that can handle sitting still for long periods.  So, I channeled my frustration with how hard it had been to learn anything and with needing to be a couch potato into creating a website so that no one else would have to go through the hassle of finding out the most basic information.  It was great therapy for me.  The blog portion also served to keep my extended family and friends up to date on what was happening.  Before the blog we would have an appointment, which was devastating enough, and then we’d have to come home and spend hours telling everyone the bad news over and over again on the phone.  Once the blog was in place things were a lot easier on us emotionally.

As to how many people have come in to the site, my logs tell me that about 15,000 distinct addresses have hit it.  That doesn’t tell us much though, they may have found us by accident after a Google search, who knows.  I have hundreds and hundreds of emails that I have answered in the years that it has been live, though I’ve never really counted them.  I had no idea when I created the website whether or not anyone would ever read any of it, it was just something I needed to do.  I am thrilled though that so many have found it useful and that it has brought such a large community of people together.

Oh, and you asked about the cord blood infusions at Duke.  Currently around 40 kiddos have had the infusions done – two are being done today.  We have recently started a formal study at Duke to see whether or not we can prove that the cord blood produces better outcomes.   This is very exciting because it could open up the treatment to a wider group of people that might not be able to travel to Duke if they can prove it to the rest of the medical community.


Jen said...

Love this, and so thankful to have found Michelle and her website!

Hydro Mom said...

Awesome blog post.

Sara said...