Wednesday, February 10, 2010

We "Heart" You!!!!

For those who do not know, February is National Heart Health Month. The week of February 7 through 14 is Congenital Heart Defect Awareness Week. This is something close to our hearts - pun intended. 

For those who have joined us recently, Lil Man was born with a congenital heart defect called Complete Atrioventricular Canal Defect.  There are many variations of this defect.  Some will have a hole in between the two Atrium of the heart (ASD) or between the Ventricals (VSD), or some combination.  True to form, Lil Man had his own variation. 

In the picture below, you will see a normal heart on the left and a type of AV Canal on the right.  In his case, Lil Man was also missing the rest of the septum between the ventricals in the picture (the wall between the chambers), he only had half of one valve, and only two lobes (as opposed to three) on both his Pulmonary and Aortic valves.  His heart was also lopsided.  It formed more on one side than it did on the other.  He was 1mm from being considered having Hypoplastic Left Heart Syndrome (See the second picutre). 

Modern medicine is absolutely amazing.  We had two outstanding Cardiac surgeons, Dr. Randal Fortuna and Dr. Geiss, who rebuilt Lil Man's heart.  They created the Mitral and Tricuspid Valves, and a 4 chambered heart.  All of this on a heart the not much bigger than a grape, sewing on tissue the consistency of wet tissue paper.  His first open heart surgery was almost 14 hours.  I have no idea how they do that everyday, but we are sure thankful that they do!  

**Click on the titles above the pictures below, and it will take you to the American Heart page to explain more.**

Complete AV Canal Defect:




Hypoplastic Left Heart Syndrome:









When Lil Man was born, we had no idea what was in store for us.  We had no diagnosis of anything before he was born.  I want to say a few words to those who may have just found out that your child has a heart defect, Down syndrome, or any other diagnosis.  You have every right to feel terrified right now.  You have a right to grieve the child that you thought you were going to have.  BUT you also have a responsiblity to your child.  The minute they were conceived, you agreed (whether you knew it or not), to do what is in the best interest of your child.  That means worrying, grieving, and EDUCATING yourself.  Right now, you are worried about what the future may hold for your child - all parents do, but yours is more intense.  That paralyzing fear of the the unknown can rob you of enjoying the rest of your pregnancy or the birth of your baby.  Remember, they are a baby first.

The absolute best thing you can do for your baby is to find out everything you can about their diagnosis.  Ask questions, write them down.  Get over being afraid and intimidated by doctors.  They are people just like you.  Many times, being an educated parent earns you more brownie points with the docs.  They treat you as part of the decision making team, as opposed to somebody they have to report to.  That is as it should be. Much of the fear you are experiencing is of the unknown.  As soon as you educate yourself, many times you will find things a little less so.  This will also allow you to be able to make better decisions for your child when you need to.

Moving on....since I am a homeschool Mom and the geeky Aunt who always gives the educational gifts (My nephew is terrified to come over ever since I informed him that I found a website where I can print off 15,000 worksheets on different subjects!  He is convinced I will make him do every one!  LOL!), I have included links to several heart organizations, heart facts, and lesson plan links.  There are some neat ones with video lessons , coloring pages, & more.  I tried to include all ages, but some things are a little over the heads of children 1 grade and younger.  Enjoy!

*Every year, an estimated 40,000 babies in the United States are born with some form of congenital heart defect.

*More than 1 million children and adults in the United States are living with a congenital heart defect and/or childhood onset heart disease.  This number is expected to increase by 5% per year due to better diagnostic techniques.

*Congentical Heart Defects are the most frequent birth defect, and unfortunately, also the leading cause of birth-defect related deaths.

*Depending on what studies you look at, between 40 and 60 % of children with Down syndrome have some sort of congentical heart defect.

Lesson Plans & Links:

American Heart Association

The Congential Heart Information Network

The Organization for Understanding Children's Hearts - T.O.U.C.H - this is the local heart group for people who have had OHS or treatment in the Peoria, IL area.

Animated map of the human heart.  This site also has links to open heart surgery.

Elementary Lesson plans on the Circulatory System

Functions and Structure of the Cardiovascular System - Lesson Plans for Grades 5 - 7

Lesson Plans, Link, and Resources on the Cardiovascular System

Free Anatomy and Physiology Videos, Lectures, and Classes

Second Grade Curriculum Resources

Kidinfo - Your Guide to the Human Body

Free Cardiovascular Unit Study and Notebooking Pages - A Montossori type Unit Study

American Heart Association Lesson Ideas and Activites


Thanks for stopping by.  Please leave us a comment.

Hugs!

Steph

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3 Comments:

Blogger Blessed with Boys said...

You're little man has been through so much, thank goodness he has an AMAZING mommy to be by his side through it all!! When are you traveling though Northern Illinois again? We need to meet up!!

February 10, 2010 at 8:07 AM  
Blogger ParkerMama said...

Such an excellent post! I'm glad your guy is doing so well, he has a pretty amazing Mommy!

Tammy and Parker
www.prayingforparker.com
@ParkerMama on Twitter

February 10, 2010 at 9:16 AM  
Blogger To Love Endlessly said...

You lil man is amazing and a true survivor. Thanks for all the great resources. I think the best thing you can do for your baby is be educated!

February 10, 2010 at 2:14 PM  

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