Transposition of the Great Arteries (TGA) and Genetics

The American Heart Association posted a new "Ask the Pediatric Cardiologist" question today on DTGA and genetic factors, including increased risk of having children in the future who also have heart defects. For information, click here. According to this source...

For a couple who's had one child with DTGA and has no other family members with transposition, the chance of having another child with DTGA increases slightly to about 18 in 1,000 or 1.8 percent. This is also about the same chance of this baby being born with a form of congenital heart disease other than DTGA. This gives a greater than 98 percent chance that the baby will be born with a normal heart.

Canadian Research News

For the complete article from LabCanada.com, please click here.

SickKids Foundation and the University of Toronto announced today a $2 million dollar donation from BMO Financial Group, which establishes the BMO Financial Group Chair in Cardiology. World-renowned SickKids clinician and researcher, and University of Toronto professor in paediatrics, Dr Andrew Redington has been named the inaugural chair holder.

The $2 million gift will allow Dr Redington to continue to pursue research and contribute to the understanding of congenital heart disease and heart function. Dr Redington's group is currently studying a novel technique developed at SickKids, that has already been shown to protect the heart and other organs from damage due to restricted blood flow during heart surgery.

"Through BMO's generosity and Dr Redington's vision, today's announcement effectively solidifies SickKids as a world leader in children's cardiac medicine," said Mary Jo Haddad, president and CEO at SickKids. "An endowed chair for our head of cardiology is a powerful tool in both retaining people like Dr Redington while recruiting others with similar credentials in the years to come."

Under The Labatt Family Heart Centre headed by Dr Redington, SickKids currently performs 80% of all children's heart transplants in Canada and cares for 80% of all the children in Ontario with congenital heart defects. More than 60% of children requiring heart surgery are under one year of age, and almost a quarter of children requiring surgery are in their first month of life.

Making a Difference

It seems that the majority of people out there working on congenital heart defect awareness, advocacy and research funding are parents whose lives have been forever changed by their child's diagnosis heart defect.

I recently read an article about one such person named Linette Derminer who has worked hard to get AED devices into schools after her son passed away from an undiagnosed CHD at the age of 17. She even created a foundation called the Parent Heart Watch, to promote research, advocacy, equipment donations and awareness of Sudden Cardiac Arrest (SCA) in youth, which is often attributed to an undiagnosed CHD. She has been nominated for Cleveland Woman of the Year. If she wins, she gets a shopping spree, but more importantly, her charity will receive a hefty sum from Chevrolet. Please join me in supporting her efforts by casting your vote for her today at http://www.clevelandwoy.com/finalists.asp.

The ParentHeartWatch gives the following astonishing statistics:

• National Center for Catastrophic Sports Injury reports 5-15 cases annually. This is sponsored by the NCAA and NFHS. It only records High School and College and only in the sanctioned sporting event.
  
• The Sudden Death Athletes registry records about 300 cases annually. It records athletes between the age of 15-35.
  
• The Center for Disease Control reported 2504 cases of heart disease deaths in their latest report year of 2002 under age 24. Over half were in the 15-24 age group. This does not include cases of impact to the chest or secondary effect from other causes such as lightning, heatstroke, etc.
  
• SCA is estimated to affect up to 7,000 young people annually according to the Pediatric Clinics of North America Journal #1999; 46(2):221-234
  
• An estimated 14,000 children and infants die annually from SCD according to the Heart Rhythm Society in May 2004

Great work, Ms. Derminer! You are just one awesome example of the many people out there making a difference for both today's and tomorrow's children by refusing to forget the struggles of yesterday's and today's CHD patients.

"A hero is not an extraordinary person but an ordinary person that does extraordinary thing"
-Christopher Reeves

World's First Non-Surgical Tricuspid Valve Replacement!!

Nurses at Miami Children’s Hospital’s Congenital Heart Institute helped ensure a good outcome for the recipient of the world’s first non-surgical tricuspid valve replacement, placed in January in the facility’s cardiac catheterization lab.

Click here for the complete story from Nurse.Com.

Health Insurance Help for CHD Families

Are You or Someone You Know Eligible for Free or Low-Cost Health Coverage?

The Foundation for Health Coverage Education (FHCE) has developed an interactive web site that allows consumers from all 50 states and the District of Columbia to assess options available. "While the information on the site isn't new...its interactive format lets users shortcut through complexities to personalized options much more quickly and easily. The foundation, funded largely by the insurance industry, argues that the oft-cited figure of 43 million uninsured Americans includes many people who don't know of the choices available to them." (Gerber, Washington Post, 8/21)

The website is one of four ways the FHCE highlights on their website to help people find coverage.

1. Website/Health Coverage Eligibility Tool - Consumers answer 5 questions to help determine which programs they could qualify for.
2. Phone/US Uninsured Help Line - A Hotline (800-234-1317) is available 24 hours/7 days a week.
3. Health Care Options Matrix Grid - Consumers can print or download their state's free quick reference guide to public and private health care options.
4. State-by-State Application & Enrollment Database - Consumers can find resources and applications, by state.

The mission of the FHCE is: "To simplify public and private health insurance eligibility information in order to help more people access coverage."

To access these tools on the FHCE website, go to: www.coverageforall.org/

Poem: The Day I Became a Heart Mother

A special thanks to Christina Davis, a member of the InterMountain Healing Hearts (based out of Utah) support group, who shared this poem for the blog. Thanks, Christina!

The Day I Became a Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

- Author Unknown