Tomorrow's a Big Day!

Over 200 people are gathering in Washington DC tomorrow to promote the Congential Heart Futures Act. Steve, my co-blogger, will be there, keeping us filled in on the progress, providing some interviews and promoting the cause. I'm disappointed that due to last-minute circumstances I can't make it!

Here at the CHD Blog, we frequently receive stories and poems, some of which we post. There are a lot of heart warriors out there, and, in my mind, it's a wonderful thing. Lately we've received a few emails from a Heart Dad in Kentucky, one of which we posted. Recently he sent a poem to share with our readers. After consulting with my co-editor, we felt it was well worth posting, and hope you will agree, even if you come from a different religious background!

My Life Yet To Come

by David Moore

My days were numbered from the very start

I fought for every breath due to my heart

My PDA closing I started to gasp

Just trying to breathe became such a task

The medicines they worked for a couple of days

But my heart still beating like I was running a race

It was beating so fast it was wearing me out

My heart was failing there was not doubt

My parents were worried, distressed, and confused

The tears now flowing due to the news

Tomorrows the day I go under the knife

I'm not even two weeks and fighting for my life

My lactic's were climbing and my function so poor

I had not the energy to play on the floor

I'm feeling so weak I just want to sleep

Something my mom is watching is starting to beep

I can hear them talking but just don't understand

I am still comforted by the warmth of her hand

The tone in her voice as she started to speak

Something about Jesus and my soul to keep

I have my eyes closed but I still see a light

I'm am very little but I know something's not right

I hear my mom cry as I took my last breath

But I am to young fear this thing they call death

The first thing I saw when I reached towards the glow

Was the figure of a man that for some reason, I know

He wrapped me in his arms and I felt so safe

I reached up to him and I touched his warm face

He spoke so softly and as not to startle me so

He told me he loved me and was letting me go

He told me a story of my life yet to come

That one day my living would be witness to some

I don't know why and I still can't explain

But I opened my eyes when I felt a sharp pain

I took a deep breath and I started to cry

I looked up to see mom with a tear in her eye

Still hooked to wires and lying in bed

For some reason I'm stronger and wanting to be fed

My parents don't know it but I saw God that day

He gave me more time to frolic and play

God has his reasons that some live and some die

What some parents have to endure leaves a question. Why?

I know it's not fair but I don't question the choice

I am a witness for him and I still have a voice

My heart isn't normal but it's perfect you see

Because without it there's no story, no poem about me

I'm one of Gods miracles a testament to his grace

I was only a week old but I got to touch his face.

David, like many of us, saw a need and void in the CHD community, so created a network, kentuckianalefthearts.com.

Within the heart community there is a lot of talk - how many groups are too many? Aren't our efforts too diluted already? Yes, we are diluted, and we need to unite. But are there too many groups? My answer, though many will not agree, is that different people need different levels of support, wish to be active in different ways, and have different overall goals. We all have one thing in common though - we all are, or love, someone with a heart defect. We all strive to make a difference for others that have walked down the often scary and lonely path of CHD survival and loss. We find it in a diverse array of ways, but we are united in spirit and hope for cures, better support systems, increased research and greater awareness.

Share your group's information and services, and we'll be happy to post them here - the more we network, the greater impact we can make!

It works better when you work together!

It’s hopeless.

We can’t do anything.

That is what parents of babies diagnosed with Hypoplastic Left Heart Syndrome (HLHS) were told not many years ago. The word Hypoplastic means “underdeveloped”, and that is exactly what has happened: the heart’s Left Ventricle is much too small to pump blood to the body. The hypoplasia extends much further than the Ventricle; the Aortic and Mitral valves are tiny (or nonexistent), and the Aorta itself is tiny. The child is alive only because of a Patent ductus arteriosus, a “built in” heart defect everyone is born with.

The Ductus Arteriosus is a small connection between the Pulmonary Artery and the Aorta that allows the heart to function while still in the womb. Once the child is born, the connection will close by itself, usually in less than two weeks. A connection that is “stuck open” — a Patent ductus arteriosus — is easily corrected. But in this case, when the ductus closes, blood flow drops and the child goes into shock.

HLHS was the defect the doctors had no answer for. Obviously, a surgical repair was the only option, but how? How do you fix a heart that is, for all intents and purposes, missing the left half? A heart transplant was an option, but rarely was an infant’s heart available, and there was almost no time to find one.

But in the early 1980’s the answer came. Rather than try to fix everything at once, make the repair in stages. Three operations, (known collectively as the Norwood Procedure) performed in sequence, allowed the child to survive. Certainly it was understood that this wasn’t a cure, but the child could live if he or she received lifelong medical care.

Fast forward to 2009. The first generation of HLHS survivors are now in their early to mid 20’s. And with no older survivors, no one has any idea what future health problems may affect them. Like Edmund Hillary climbing Everest, no one’s been here before, and no one has a clue what's ahead.

The CHD Blog and Adventures of a Funky Heart will both be in Washington, DC on February 10, 2009 to support the National Congenital Heart Coalition (NCHC) effort to create a national registry of patients with heart defects. The NCHC is made up of several different CHD organizations, working together for the first time. The American College of Cardiology, the Adult Congenital Heart Association, It's My Heart, the Congenital Heart Information Network, Mended Little Hearts, and the Children's Heart Foundation have all come together to work for this important cause. (The group information is taken from the cover of the informational packet that was mailed to attendees; there may have been more groups that have joined the effort since then!)

If data is gathered about those of us living with a Congenital Heart Defect right now, it could be analyzed and used to predict our future health care needs. It can also be used to make things a little easier for the next generation of CHD patients. As an example, I take 11 different medications. Yes that is a lot, but some CHD’ers take more, and some take less. If the knowledge gained from a national registry could eliminate one medication that each of us has to take, the savings would be phenomenal.

Much too often you read in your local newspaper about the child who needs surgery for a major heart defect (Infant Survives Heart Surgery, reads the title of the one and only article about me in the local Daily Planet) but what happens after that? Usually you don't see a follow up article in the local press. But Cardiac Kids grow up; we get jobs, pay our taxes, fall in love…

... In other words, we live our lives.

Become a CHD Advocate!

When you are a survivor, or a parent of a child that is or was affected by a CHD, you often feel helpless in a sea of insurance, legislation and lack of information. Many many of us never knew that 1 in 120 children born each day are affected with CHD before we received a diagnosis. And almost everyone affected wants to change that.

Many groups across the U.S. are working on providing support and comfort to people affected by a CHD diagnosis. But who is working with our legislators and government agencies to bring about desperately needed change? How can we create a better future for CHD survivors?

The answer? The National Congenital Heart Coalition. Formed just over a year ago, this coalition is the culmination of six major, US national groups' efforts to create a climate of change for our disease. We seek to create better avenues of awareness and advocacy, which in turn will lead to greater focus on research and technological advancements that will save lives through earlier diagnosis, better screening, advancements in quality of life and surgical breakthroughs. Consisting of the Adult Congenital Heart Association (ACHA), the Children's Heart Foundation (CHF), Children's Heart Information Network (CHIN), Mended Little Hearts (MLH), Saving Little Hearts, It's My Heart (IMH) and Little Hearts, this newly founded organization is already making strides in unifying our cause. Current projects include the creation of a unified message, creating a presence in government agencies who monitor CHD and distribute funds for research and, most recently, a unified effort in lobbying our government for a central registry of CHD statistics.

Lobby Day has been a significant effort undertaken by the ACHA over the two years. This year, the entire National Coalition (NCHC) is behind the effort, and YOU are invited to help us make a difference! You are welcome to attend the lobby day, which will be held on February 10, 2009 in Washington DC. Or, you may learn how to participate in your own local area.

Online registration is now open and available at: www.achaheart.org/getinvolved/lobbyday2009.php.

First Hearts United Conference held for HLHS families

PRLog (Press Release) Bloomington, MN, USA. Jun 23, 2008 -- The non-profit organization Hypoplastic Right Hearts held its first-ever medical and educational conference, Hearts United 2008, in Bloomington, MN June 18-21, 2008. Families with children born with hypoplastic right heart syndrome (HRHS) from around the US and Australia gathered to meet in person for the first time, and some families had never met another child in person with the same diagnosis.

The members of Hypoplastic Right Hearts planned and fundraised for almost 3 years to make this special event happen.

Five years ago when Amanda Adams of Colorado had a baby boy born with a complex, life-threatening congenital heart disease (CHD) where the right ventricle of the heart does not develop properly, she felt all alone as her newborn son faced multiple open heart surgeries to have a chance at survival. Consequently, Adams founded and became president of the online non-profit group, Hypoplastic Right Hearts (www.hypoplasticrighthearts.org). Hypoplastic Right Hearts provides emotional support for parents, primary caregivers, survivors and their spouses, and bereaved parents of children with CHDs that result in a hypoplastic right ventricle. What started with a handful of “heart moms” as a Yahoo! Group in 2003 has now grown into a worldwide membership of over 450 families.

For more information about Hypoplastic Right Hearts group and Hypoplastic Right Heart Syndrome: http://www.hypoplasticrighthearts.org