Meet Marty in Illinois

Updated:May 9,2013

KWH Marty V IL updateMarty was born with a complex heart defect (complete AV canal) that did not allow his heart to finish developing. He was left with a large hole between his atria (top chambers) and his ventricles (bottom chambers).

His heart never correctly formed a mitral valve and his tricuspid valve was deformed. 

By the time he was 7 months old, Marty had two surgeries to surgically repair his heart with gortex patches and reform his mitral valve.  These valve repairs were unsuccessful so at 10 months old a mitral valve replacement was discussed.  There is only a 5% chance of survival in infants so his parents wanted to put off this surgery as long as possible. 

After doing a lot of research they found an amazing doctor, Dr. Peter Frommelt at the Children’s Hospital of Wisconsin, who has been treating Marty with medication since he was a little over a year old.  Thanks to Dr. Frommelt, Marty will be surgery free for another year.  The older Marty gets the better the chances are for a successful mitral valve surgery.

KWH Marty V IL slideIn addition, one of the best ways to help your heart thrive is through proper nutrition.  Marty’s heart problem made eating difficult since birth so he had a feeding tube placed when he was 7 months old. 

He used to carry his feeding pump in a back pack up until February  2012 when he was finally able to begin eating on his own.   The Feeding Team at Children’s Hospital of Wisconsin has been the key component for keeping Marty healthy through proper nutrition and teaching him how to eat which is no easy task when you’ve been on a tube your whole life.

Marty is getting ready to graduate from Kindergarten.  The school year has been fun with him enjoying a full day of classes 5 days a week.
Eating lunch with his friends is a great activity he really looked forward to, but after the first 2 months of school - he suffered a signficiant weight loss and had to be moved to the allergy table to eat his meals and subsequently miss recess.  Marty is still getting familiar with all the different delicious foods out there and being able to eat them in a timely fashion.  He is still slow at eating and can get overwhelmed by a fast pace of swallowing so we thought it was best to have him forgo recess in an effort to give him more time to comfortably eat.  He's doing a much better job now and is able to go out for recess one or two days a week. 
Marty is continuing to see all his therapists - and we've added one to the mix this year.  We see a neuro optometrist to help with his sight.  Although he has 20/20 vision in his eyes - they don't team together and he often sees out of just one eye.  We're trying to train both of those smiley brown eyes to work together.   These vision deficiencies are making writing and reading very challenging so a good portion of his work at school is done verbally.
Marty's heart continues to grow!  The bad leaky valve is still pumping sufficiently enough for now.  Looks like we'll end 2013 as another surgery free year!  We're so thankful for students who support the American Heart Association because without all of you - we wouldn't be able to send this cute picture along.  We went to DisneyWorld this winter and Marty took is first plane ride!
Thank you so much

Marty's Family

Read about  how Marty has inspired others by sharing his story