WPW & Mitral Valve Regurgitation in Infant

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dcarlson15

My son Will was born 12/17/2005 in Rhode Island, and was diagnosed with WPW the next day, and severe Mitral Valve Regurg a week later. We spent just under a month at Boston Childrens Hospital where he underwent a successful ablation for the WPW (Dr. Triedman - he was super!!) We are now at home waiting for Will to get bigger so they can try to sugically repair the valve. He's 10 lbs, 7 oz (born at 9lbs 2oz), and they would like him to be 15 lbs before surgery. Anyway, we have been told that severe MR in infants is extremely rare, and we have been searching and searching for info (not much luck) and or others. Anyone have any info or know of anyone dealing with MR in a baby??
 
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Mary

Glad to have you with us, but I'm sorry it's under these circumstances. I don't know the answer to your question, but we have a group of moms that have children with valve related issues who are a wealth of information.
I imagine someone will answer your post fairly soon. Hold on; hopefully, help is on the way!:)
 
G

Georgia

Welcome to the site. It might be a while before someone comes along who has knowledge on this trouble in infants; just wanted to let you know that you're welcome here.

Will is a beautiful baby. I'm sure it's been an awful month for you and your wife - you have all my best wishes.
 

Emma

Well-known member
Joined
Aug 2, 2004
Messages
1,004
Location
Portsmouth UK
Hiya,
Firstly AWWW what a cute photo of your baby! He's gorgeous!
And secondly, I'm mum to Chloe who is 6 now and has had 3 open hearts due to MR.
Her first surgery was when she was 6 weeks old and weighed 10lb 1. It was a major surgery too as she had quite a complex heart defect at birth which needed repairing, but her surgeon said her size made no difference to him and she came through fine.
She had 2 more surgeries when she was 18 months old but even then she only weighed about 15lbs as she was such a tiny little thing and again, she was fine. She now has a mechanical mitral valve as hers was just too bad for repair so she takes warfarin daily.
I know of plenty of other babies with MR also and a couple who have been diagnosed as WPW too.
Can email or give you link to Chloe's whole story if you'd like - its a little long to post on here! lol
Or I'm happy to try and answer any questions you may have here whenever you want.
Hope Will is doing well at the moment!
Love Emma
xxx
 
D

dcarlson15

Thank You!

Thank You!

Emma said:
Hiya,
Firstly AWWW what a cute photo of your baby! He's gorgeous!
And secondly, I'm mum to Chloe who is 6 now and has had 3 open hearts due to MR.
Her first surgery was when she was 6 weeks old and weighed 10lb 1. It was a major surgery too as she had quite a complex heart defect at birth which needed repairing, but her surgeon said her size made no difference to him and she came through fine.
She had 2 more surgeries when she was 18 months old but even then she only weighed about 15lbs as she was such a tiny little thing and again, she was fine. She now has a mechanical mitral valve as hers was just too bad for repair so she takes warfarin daily.
I know of plenty of other babies with MR also and a couple who have been diagnosed as WPW too.
Can email or give you link to Chloe's while story if you'd like - its a little long to post on here! lol
Or I'm happy to try and answer any questions you may have here whenever you want.
Hope Will is doing well at the moment!
Love Emma
xxx
Please send link!! and thank you
 
J

JeanneImp

Hi,
Sorry to have to meet you this way, but hopefully some of us Mom's can help.

Matt is now 19, many years past infancy and doing well! There are many families similar to yours. I would suggest you start at tchin.org (Children's Heart Information Network) There are several babies/toddlers and survivors with this very same *rare* defect......

You are in a great hospital with top notch doctors....
 
D

dcarlson15

Will's Update

Will's Update

Will had his MR surgery scheduled for 2 weeks ago. Three days before, he had his final pre-surgery EKG, Echo, X-Rays and Blood Work. After all of his tests, we went to eat at the Cafe in Children's Hospital (we have become quite fond of the chicken wraps), and we went back to talk to our Doc about the test results. Will has been on Captopril, Lasix and Digoxin and 1 liter of oxygen (for his Pulmonary Hypertension) for all of his 4 months. So, hoping to hear that they would be performing a repair rather than a replacement, our Cardiologist sat down with us, and paused for what seemed like 5 minutes. He said, I really don't know how, but Will's severe Mitral Regurge, has been downgraded to Mild-Moderate, and his Pulmonary Hypertention is non-existent. We will be cancelling his surgery indefinitely!!! It is still likely that he will need surgery at some point, but certainly not in the near future. Will continues to strive, and now measures almost 27 inches long, and just over 13 pounds. He is our miracle. I have not posted recently, but I read VR.com frequently, and have found many many inspirational stories, and I just wanted to share some of our story. As our doctor said, the body is an amazing machine, and we see things evey day that amaze us. I thank you for your prayers, and we will continue to pray for everyone out there affected my CHD. If you would like to learn a little more about Will's story, my wife Kelli does an amazing job at:

http://www.carepages.com/ServeCarePage?cpn=WillArenCarlson&extrefid=tlcinvite

Many of your stories have touched us, and helped us through, and maybe ours will help or inspire someone else.
 
N

Naomi

That's just amazing! My son is the same age (his due date was 12/17 but was born 11/27) and I can't imagine going through all of that! It's so great that his tiny little body has healed itself! What a gift! I hope he lives a long healthy life!
 
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