It's My Heart CHD Conference 2009

Yesterday, I got to go to the "It's My Heart CHD Conference" in Houston! It was GREAT!

For those of you who don't know....Dr. Mott has been recruited to Philidelphia Children's and will be leaving Texas Children's in August. :*( He is Sarah's cardiologist and we have truly loved getting to know him. He is a great doctor and Sarah likes him so much that she frequently asks to "call and talk to Dr. Mott"! LOLI have to explain to her that he is a VERY busy and important Doctor and he can't answer the phone. We will be fine with a new cardiologist! Dr. Mott told me he has us "taken care of"! Yea! Good to hear since her surgery is coming up in October!

Okay.....on to the conference....Some of the interesting things I heard today:

*There was NO heart surgery allowed prior to 1900.

*Dr. Robert Gross wanted to close the first PDA but was told NOT to do it. He waited until his boss was out of town and it was a success!!!!

*Dr. Helen Taussig (The "T" in the BT Shunt) was the first female pediatric cardiologist. She was denied at Harvard as a student because she was female so she went to Hopkins and became VERY successful!!! (despite being told "women" couldn't do that!) Ladies.....this is a VERY good example to tell our little girls! ESPECIALLY those with heart defects!

*Long ago, the only way to stop the heart was to reduce the child's body temperature to 30 degrees! That only allowed for 10 minutes of surgery time. They literally had to PACK babies in ICE! THANKFULLY, we have much better methods available now!

*Dr. Gibbons, the man who created the first bypass machine.....spent THIRTY YEARS developing it and figuring it out!!!!

*The first survivor that had been operated on with a bypass machine lived until the year 2000!!!!!

*Before the bypass machine....they tried to use a parent as the bypass machine. The theory was that the mother provided oxygen for the baby in the uterus so they would RE-Attach the baby's blood flow to the mother during surgery so that the mom's heart could do the work for the child's body!!! MAN....and we thought WE had it bad sitting in the waiting room! (although, as we all know....we are still sending our hearts in that room when they operate!) This was called Controlled Cross Circulation. There were 45 operations of this kind. 28 survivals.

*Now, 85% of CHD children become adults! This percentage is STAGGERING compared with even 10-20 years ago!!!

*CHD affects 8 out of 1000 births. 1/3 of these is critical needing surgery before 1 year old.*3000 kids per year are Fontan Candidates.

*The focus in cardiology care has shifted over the years from simply "keeping the child alive" to "giving the child a quality of life!"

*CHD in a child puts a higher risk factor for divorce on the parents.

*Perception of support can actually help cope with our issues even if the actual support is not a reality. - Dr. Mott

*17 out of 25 siblings interviewed said they worry about their CHD sibling dying. 7 out of 10 parents said they didn't think their children thought about that.

*Texas Children's Hospital is the ONLY children's hospital to have Stereotaxis Technology in the Cath Lab. (magnetic navigation) A cath doctor could literally be in another state performing the movements of the cath by remote control! (kind of like video games but WAY more serious!)

*In 1929, Dr. Forssmann developed the first Cath Procedure. He did it to HIMSELF! He inserted the cath in his arm, walked down the flight of stairs to the x-ray machine, took an x-ray, showed it to everyone and got FIRED! Then became a urologist and much much later, shared the Nobel Prize in 1956 for developing the heart cath!!!!

*The newest thing is called "Cutting Balloons" which are the balloons used for caths but they have 3-4 microsurgical blades mounted. These are helpful in cases of scar tissue or narrowed vessels that do not respond to a normal balloon.

FAMILY LIFE:

*Dynamic: Marked by usually continuous and productive activity, change or effective action. Energetic, forceful, vigorous, spirited, alive! (Let's all strive to be "DYNAMIC FAMILIES!"

*It's NOT what happens TO us. It's what we choose to DO with what happens to us that matters.

*You must choose meaning or despair. However, the only path to meaning is through despair.

*The best thing we can do for our children whether they are children of CHD or NOT is give them:
*Stability - Find stability in little things.
*Predictability - Find the things that you can show them are predictable.
*Honesty - Tell them the truth without scaring them but don't say it won't hurt if it will, etc. Ex: "It may hurt, but it will get better."
*Safety/Boundaries/Discipline - DO NOT let your CHD kids run over you! They are already different. Don't make them MORE different by not treating them with the same rules as everyone else.
*Sense of Control/Choices/Responsibility - EX: "Would you like me to make your appointment for the morning or afternoon?" "Would you like to wear something special home from the hospital?" etc. FIND things for them to make choices about!

*A book we should read is "Raising Whole Hearted Children" by Renee' Brown

Ways to COPE!
1. SPEAK out.
2. FEEL out loud.
3. ASK for what you need! (emotionally, physically, etc.)
4. TOUCH let the child know their body is more than just their heart. Hold their hands. Rub their head, feet, etc. while in the hospital. This gives them a sense of connection. Eye contact is a kind of touch.
5. Share your story.
6. LOVE
7. BREATHE fully every day. STOP. Think about it! Breathe in with your nose and your tummy should expand. Then, fully exhale through your mouth and empty your lungs. This is ssoooooooo good for your system. AND your child. You can practice together.
8. PLAY! Families that play together stay together.

*YOU cannot lead your family where you ARE NOT willing to go. (You cannot lead them to happiness, peace, despair, sorrow, pity, if you are not willing to go there.)

Okay....those are some highlights that I found very interesting and wanted to share!!!!!! Hope something on this note helps you in some way!

The best parts of the day were that I got to talk to Dr. Heinle and he was happy to tell me that he saw Sarah's name on his "upcoming" list yesterday! He hasn't seen her for 4 years and he remembers her! He is the surgeon that has done both open heart surgeries! I didn't even want to shake his hand because I'm scared to touch it! LOL What if I squeeze to hard and broke his finger! Knowing that his hands have touched my daughter's heart makes me cry a little tear! What a special gift!

Also, Dr. Mott pulled me to the side to talk to me about his move. I could tell that he had a hard time making the decision to take the next step in his life. I am glad for him that he did, though!

I met O'Shea! Mark & Jay are so sweet! They are adorable and autographed a CD for Jason! Mark is an adult that was a child with CHD! Watch them on Can You Duet on CMT on Sat. nights at 7 pm.!!!! They are in the finals!!! (Like American Idol but for Country singers!)I met some GREAT girls from Michigan today! Fun to talk to and very inspiring!!!!

Have a blessed week! Sharon