Video

http://www.imdb.com/video/wab/vi2620785177/

Interesting....

When Dr. Helen Taussig wrote Congenital Malformations of the Heart in 1947, she described one malformation as “Atresia or marked hypoplasia of the aortic orifice prevents the expulsion of blood from the left ventricle in the normal manner.” Taussig described several variations of the defect – actually different defects, later grouped together under the same deadly name – but could offer no treatment suggestions. Her Tetralogy of Fallot (ToF) patients could at least squat and get some temporary relief; children cursed with this malady died in less than one week. The left side of the heart wasn’t damaged as much as it just wasn’t there.

It wasn’t until 1958 that Dr. Jacqueline Noonan and Dr. Alexander Nadas named the group of defects Hypoplastic Left Heart Syndrome (HLHS). Hypoplastic comes from the root word hypoplasia, which means “small”.

But having a name for it didn’t make it any less deadly as HLHS continued to claim 100% of its victims. This sad story continued until 1985, when the first successful infant heart transplant took place.

At about the same time the Norwood Procedure was developed. Originally designed as one operation (which consistently failed) the procedure was soon split into two heart operations – and eventually three – which seemed to work. HLHS children now had a chance. Obviously long term survival rates aren’t known yet, but approximately 70% survive the three surgery protocol.

And thats when the dirty little secret of HLHS showed itself: While survival rates for the three operation procedure may be in the 70% range, getting from Stage I to Stage II is the hardest step.

The goal of the Stage I operation is to make the Right Ventricle do the job of the defective Left Ventricle – getting the blood to the body. With all of the blood flowing through the right side of the heart, that side is subject to higher flow pressures than it usually receives. A lot higher. In a defect in which the entire left side of the heart is damaged, a successful outcome usually depends on the Tricuspid Valve – located on the right side of the heart.

The inital results were confusing. The Norwood worked – then it didn’t. There didn’t seem to be any rhyme or reason to it, no way to predict outcomes. The surgery itself worked, but too often the results seemed to be as random as a roll of the dice. The answer was the Sano Shunt, invented by Japanese surgeon Shunji Sano – a direct connection from the Right Ventricle to the Pulmonary Artery through a Gortex conduit. (this sounds redundant, but the Pulmonary Artery is normally disconnected from the ventricle in the Stage I operation). Studies showed that survival chances with the Modified Norwood was 11 times greater than with the Classic Norwood.

And now it is time to turn the tables – we’ve got a nasty little trick of our own. Heart defects have to start somewhere… at some point in fetal development, there must be one isolated problem that seems to “snowball” into something bigger as time passes. If we could find that one little problem and repair it then, maybe we can stop the snowball before it gets too big. A pretty cool idea, and maybe one day…

Someday…

A study released Monday (September 28, 2009) revealed that for seven years, doctors at several hospitals in Boston and Harvard Medical School have been detecting Aortic Stenosis in fetuses. Fetal Aortic Stenosis is a snowball; it usually becomes HLHS as the fetus develops.

70 future HLHS patients underwent surgery while still in the womb – a needle was inserted into the mother’s abdomen, passed into the fetus, and into the heart of the unborn child. A small balloon was used to enlarge the abnormally small Aortic Valve. 51 of the procedures were considered successful… and 30% (17 children of the 51) were born with two functional ventricles. That’s 17 children who won’t have HLHS.

Mark September 28 on your calendar… that was the day that the CHD world changed forever.

Nathan Update

We had his cardiologist appt yesterday. Everything went really well!! I am SO SO SO proud of him. He was so amazing. I have never seen a kid be so good while doctors look at them. He smiled and laughed. Even gave Dr. Finnigan a hug and kiss before leaving. I brought all kinds of distractions knowing that the echo would take a while. But he didnt need any of them. All he needed was a bag of 100 calorie oreo cookies:-) During the echo he watched a cartoon and would look over at the tech and smile. He would also stroke her arm and kissed the wand they use:-) too cute! He also liked running around in the halls with just his diaper giving the nurses a good laugh.

He is 23 pounds now! Dr Finnigan said he is doing well. We have a few concerns but nothing that needs immediate attention. He has a leaky valve that we are not sure how bad. So the plan is to go back in December for another echo. Dr Finnigan is debating on weather he should have a diagnostic cath just to get a better picture. He is still guessing his next surgery should be between the age of 3 and 4. So we have another year and a half. Which is good.....but part of me so wants to get it behind us. I know this next surgery is going to be the biggest. But I will take the year and a half of him just being a kid!!!

Thank you so much for all the prayers. We really do appreciate everyone. Nathan is so special and has brought more than I can explain to this this family. He has a purpose and has proven that he is a fighter. I so proud to be his mother:-)


Hope everyone is doing well!

Laura

Intresting study

***I find this very interesting and a much needed program. There are 2 parents in our support group that lost their sons to an undiagnosed heart defect. Both were in high school. Any parent can ask for a simple EKG and stress test from their family doctor but I believe these test will be offered in schools for all kids once awareness is raised about CHD's.**** Hope everyone is doing well! Laura


On Thursday, June 4th, there was a feature on Channel 11 in Houston on heart screenings at a Houston elementary school. The results were surprising. http://www.khou. com/news/ local/education/ stories/khou0906 04_jj_hearts- free-screening- key-middle- sch.4ab6e5ba. html

By Leigh Frillici / 11 News

HOUSTON -- In May, nearly 100 6th graders were screened for cardiac problems at Key Middle School. Preliminary results show that 10 of those children had problems that needed medical treatment. Two of those students had heart abnormalities that could have led to sudden death.

The findings led those two children to be treated at Children's Memorial Hermann. Five other Key Middle School students had heart conditions that need to be monitored. Three more students had high blood pressure problems that required treatment.

The results surprised Dr. John Higgins, the principal investigator of the Houston Early Age Risk Testing and Screening Study or HEARTS program.

Dr. Higgins said that previous studies indicated that researchers would find one out of 100 students would have heart conditions.

Instead his preliminary results showed one in ten students had problems. Higgins believes this program saved the lives of at least two students especially since Sudden Cardiac Arrest is a silent killer.

Often families do not realize their child has a heart condition until it is too late. Last year, two Houston area students died from heart abnormalities. Both were girls who were in the middle of playing basketball when they died on the court from sudden cardiac arrest.

This study differs from others done in the past. Most heart studies have focused on teen athletes.

The HEARTS program will be testing all 6^th graders in five area schools. The children will receive a physical, EKG and ECG for free.

The children that had medical problems will also receive treatment for free, including the children who may need surgery.

The Houston Rockets organization is behind a lot of the funding for this program along with the Memorial Hermann Foundation.

Doctors at Houston’s University of Texas Medical School are also involved with the program.

Dr. Higgins said he would like to expand the HEARTS program to test all 6 ^th graders in HISD. The problem is funding.

If anyone would like to contribute to the HEARTS fund, you can contact the Memorial Hermann Foundation at (713) 448-5249.

Low cost screening is also available to families that would like to have their children checked for underlying heart conditions. Screenings are available at the Memorial Hermann Heart and Vascular Institute - TMC. The cost is $150. Anyone wishing to schedule an appointment should call (713) 222-CARE.

Great Daddy!

Jason took Joshua on a ride in the rain the other day and they went Rainbow chasing! Here is a picture. They drove around for a long time trying to find the end of it. :-) So long Joshua ended up falling asleep. But he woke up the next day talking about it!

In the car with Joshua

I was driving Joshua to a playdate the other day and he said....."Mama, please dont push my buttons today"

I told him that I would try hard not to.

:-)

Update on Nathan

Hello Everyone!

Well, at Nathans last visit Dr. Finnigan heard something in his lungs. I didnt mention it because I wasnt really too concerned. He went today to have Dr. Finnigan listen to them again. He heard the same thing. So, not good news. What does this mean? Well, not sure at this point. Dr. Finnigan seems to believe it could be the way his aortic arch is positioned next to his trachea. This would explain whay he tends to breath heavy when playing. At this time if this is the problem there is no cure. No medicine. No surgery. But sometimes kids grow out of it. We are going to wait and see if this is the case with Nathan. So please pray again! :-) He has a followup in July. If the sound is worse in his lungs we will do an MRI to see what exactly we are dealing with.

Hope everyone is well!

Laura

Boys plant a tree

The boys helped Jason plant a tree in the backyard. They were a big help!

Nathan mows the lawn!

Jason Dresses Nathan

Jason put Nathan's pants on.....yep he put both legs in one pant leg without realizing it until he tried to stand Nathan up:-) Even got his shoes on!!! Ha!

Typical conversation with Joshua

Me: Joshua are you hungry

Joshua: yea

Me: I can make pancakes

Joshua: ok

Me: It will just be a few minutes I need to cook them

Joshua: NO! I dont want them cooked

Me: Ok - you want them cold?

Joshua (near tears) : NOOOOO I dont want them COOOOLD

Me: Ok, you want them cooked

Joshua (full out cry at this point): NOOOOOO!!!!! I just want I want I want I want.....

Me: Honey calm down, what do you want? You dont want them cold and you dont want them hot.....would you like them warm?

Joshua (still crying, but I am seeing a light in his head) I just dont like them cold. I just like them kinda cold.....but not hot.

Me (i may have rolled my eyes at this point): Honey that is what warm is. I will make your pancakes warm.

Joshua (no tears now): Clean my face mama? (he asks this everytime he is done crying)

I clean his face and make pancakes.....

Me: Here are your pancakes Joshua

Joshua: I just dont want pancakes.


?!?!?!?!?!?!?!?!?!?!?!?!?!?!ARGH!?!?!?!?!??!?!?!?!?!?!??!?!?!?!??!

Me: Ok then......starve


(ok maybe not the last part but I was so thinking it!)

Update on the boys

Nathan's appointment went very well! He is doing great heart wise and the doctor is very happy. :-) hooray!

Joshua started preschool! He is really enjoying it. The teacher wrote me a note and said on his first day when one of the other kids were crying Joshua went over and gave him a hug and told him it was going to be okay:-) I am so proud of him! And this is coming from a kid that has not been away from his parents at all except to spend a few hours with his Granddad and Grammy. I am so glad I waited until he was really ready.

This is also good for Nathan. We get to spend the one on one time that he really needs. He seems to miss his brother though. When I say Joshua's name Nathan starts looking around. So cute.

The boys are still total opposites. Joshua is so outgoing and Nathan is very reserved. Sometimes when Joshua is "acting like a monkey" I catch a glimpse of Nathan's face and it looks as if he is saying "dear god, whats wrong with him?"

They are also in different stages. Joshua is all about building things.....where as Nathan.....he is all about knocking things down. So it is a balancing act to say the least.

I hope everyone is doing well!

Love
Laura

March 28th

Hello Everyone!

Well, this is just a bit late but better late than never:-)

March 28th was the one year mark for Nathan's surgery. Yes one year has passed. Jason and I can not believe what all our family has been through. And we havent gone crazy! I call that a success.

Nathan is doing very well. He has his cardiologist appointment tomorrow at 9am. Of course I am nervous but I am hoping that he will get a good report.

As far as day to day stuff Nathan is just like every other 17 month old. He is running and playing all the time! So I have two crazy boys to run after now. I couldnt be happier.

I will let everyone know what the doctor says tomorrow. Please think of us tomorrow and send good thoughts.

Love

Laura

Please Read!!

Act Now By Contacting Your Senators & Congressman!

Dear Family and Friends

You did it! Thanks to all your letters, emails, and visits, and the efforts of our partners in the National Congenital Heart Coalition and at the American College of Cardiology, late yesterday the Congenital Heart Futures Act was introduced in both houses of Congress! In the Senate, Senator Dick Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi. In the House, the bill's lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida. We are thrilled that this groundbreaking piece of legislation has already received bipartisan support.
To learn more about the bill visit
http://durbin. senate.gov/ showRelease. cfm?releaseId= 309944

So what's next? Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation, which is bill S. 621 in the Senate and H.R. 1570 in the House. It just takes a minute - here's how you do it:

1) Go to http://www.senate. gov and http://www.house. gov/ to look up your representatives and their email addresses
2) Draft your email - (Templates below)
3) Make your letter personal to you. The template has a place to add two or three sentences about why this legislation matters to you personally, and offers some samples to help get you started.
4) Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress.

That's all there is to it! Please forward this email to friends and family to request their participation.

If you are a constituent of Senators Durbin or Cochran or Representatives Space and Bilirakis, we encourage you to email or call their office and let them know how much you appreciate their leadership of this effort.

Need more information? Contact advocacy@itsmyheart .org with any questions.

TEMPLATE SAMPLE LETTER

Dear [Lawmaker name here]

I am writing as a member of the Adult Congenital Heart Association to ask for your help in making a brighter future for all those born with heart defects. Yesterday the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570)and help all those born with heart defects live longer, healthier lives.

Congenital heart disease is this country's number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.
-----

Insert 2-3 sentences saying why you care - some examples:

From an adult patient:
Since being born in 1956 with a complex heart defect, I have undergone 4 open heart surgeries and am currently on disability due to my heart. I have struggled to get the information and care I need to take care of my rare condition, as doctor after doctor answer my questions with, "we just don't know". The federal government should use my tax dollars to do the research to get those questions answered, so that both today's adults and tomorrow's children get better care.

For a parent:
My daughter was born with a complex heart defect and underwent three open heart surgeries before she was three. I want to be hopeful for her future, but right now I know there is a severe lack of research, awareness, and resources available to help us help her do well as she gets older. Please help me help my daughter survive to become a healthy, productive parent and grandparent.

For a family member or friend:
My grandson was born with a complex heart defect and underwent three open heart surgeries before he was three. I want to be hopeful for his future, but right now I know there is a severe lack of research, awareness, and resources available to help us help him do well as he gets older. Please help me help my grandson survive to become a healthy, productive parent and grandparent.

From a health care provider:
As a doctor taking care of congenital heart patients I struggle to find the information and resources I need to help these patients thrive. These patients face high risks of developing additional heart problems as they age, and we have limited information on best treatment strategies. Many health care providers are unprepared to care for their complex life-long needs. Please help me protect this pioneering and vulnerable population.
-----

To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.

Thanks in advance for your help in securing a future for all those living with congenital heart disease.

more

More Photos

Photos

Updating with Photos

I bet everyone has been wondering where I have been and why there are not more photos! Well two kids can keep you busy! Plus my new volunteer work with the Dell Childrens/Milagros Foundation has had me very busy also. Today Jason took the kids to the park and I have some alone time and decided to catch everyone up on the Todd family.

Everyone is doing great. Joshua turns 3 on March 7th!!! I cant believe it. He is getting too big:-) for his own good! We are tackling the potty training. And well....it is a work in progress. Seems he is like me and very stubborn. But we will get there. He has his own friends and is a very smart and happy boy. His favorite thing to do is build things. Can spend the whole day doing that! He also just got a bunk bed. His Granddad and Grammy took him out shopping for new sheets for it. He enjoyed going on his first outing with them. And, from what I hear so did his grandparents, so they might be doing that more:-)

Nathan is doing well also. On March 28th we will celebrate one year post op!!! I can not believe it has been a year since his heart surgery. Time has flown. His scar is hardly noticeable. He is walking, and saying some words (only me and Jason can understand;-) ) He has an appointment for his 15 month checkup next Friday so I will fill everyone in on how he is doing. He also has a cardiologist appointment on April 3rd. I always get nervous before those appointments but I am slowly learning to never look too far ahead. It just makes it hard to enjoy what I have at this minute. Nathan is completely off his beta blocker and is sleeping much better. Now we are dealing with teething pain but I can handle that! I am completely amazed by Nathan. He has such a cute personality. He is learning to get his way too:-) Just like his brother!

Ok so I am going to post some random pictures but I will need to split them in multiple posts.

Hope everyone is well!

Laura

Please read

Hello Everyone

I wanted to share some information about a family in our support group. Please go to http://laithdougherty.info/ and read about Laith. He is needing all the prayers he can get right now. I cant imagine how his parents are feeling right now, and to tell you the truth it saddens me to think that a parent would have to go through something like this.

Jason and I struggle with our own insurance issues, but nothing like this. This is just proof that the USA has a long way to go when it comes to health insurance. How can we let a child die just because his parents do not have the right kind of insurance? You may say...well there must be something they can get or do. They are looking into every possibility and will do anything. But when it is all said and done, they shouldnt have to be searching for ways to keep their child alive. They should be with him, holding him, loving him. They should spend their energy trying to give their son hope, not have hope taken away.

I can only hope they find a miracle before it is too late.

Thanks for reading and I hope all is well!

Laura

February 14th is National CHD Awareness Day!

Hello Everyone,

February 14th is not just Valentines it is also National CHD Awareness Day. I am posting a video that our group put together to help spread awareness. Please watch the video and consider donating to the Childrens Heart Foundation or the Austin based foundation Milagros.

http://www.onetruemedia.com/otm_site/view_shared?p=51ce70593fcfb0f59cbc55&skin
_id=801&utm_source=otm&utm_medium=text_url

Hope all is well!!

Laura

Flowers

Hello Friends and Family,

I was writing to let you all know that if you order flowers for any holiday season (i.e. Valentines, Mother's Day, birthdays, Christmas) this year, you can make a contribution to the Childrens Heart Foundation (CHF) by ordering through www.proflowers.com/CHF. CHF provides grant money for research of congenital heart disease (CHD) studies. As far as I know, they are the only organization that does research on CHD. There are many other organizations that do studies on adult heart disease but none that specialize in children born with heart disease. You can learn more at CHF's website at www.childrensheartfoundation.org. Some of the studies they have funded are listed on the website.

I think this is an important contribution to all heart families and everyone in general. Please keep in mind that congenital heart disease is the #1 birth defect in the US. There is one child out of every 125 that is born with CHD. Valentine's Day is National Congenital Heart Disease Awareness Day.

I appreciate your support and thank you for listening (or reading).

More pictures

New Addition to the Family!

Here is Chloe. She is 5 months old. She is very gentle with the kids and her and Grendel get along very well!

Update

Hello Everyone!

Well we just wanted to say happy new year to everyone! The boys had a wonderful Christmas. Jason had two weeks off and I am NOT looking forward to him going back to work tomorrow!

The cardiologists decided to put Nathan back on his medication. So, once again sleep is not happening in this house! Hopefully we can reevaluate this in about a month or so.

I believe that is all now. I will upload some photos today or tomorrow!

Love

Laura