Friday, March 18, 2011

Last night

First let me say that I know not everyone takes my stance on this,but if you are a medical drama and you are talking about something as serious as a heart defect take the time to get the facts right before you put it on your show.I know Private Practice has a medical team and I am extremely disappointed that they clearly didn't consult the team. Or if they did,the medical team was clueless about HLHS.

This was only part of the letter I sent to ABC.

Congential Heart Defects happen in 1 out of 100 people and Hypoplastic Left Heart Syndrome is the defect in 1% of these cases.
However Hypoplastic Left Heart Syndrome is not a death sentance. There are options for the family.There was no reason to paint it as doom and gloom.If Hypoplastic Left Heart Syndrome was truly a death sentance like was stated on the show than many of the children and adults I know who have Hypoplastic Left Heart Syndrome would be dead.And they aren't.Get the facts correct.

This was what I posted on the ABC boards which I never do.

I have been watching Private Practice from the beginning and this is the first time I was truly angry by an episode.Congential Heart Defects happen in 1 out of 100 people and Hypoplastic Left Heart Syndrome is the defect in 1% of these cases.

However Hypoplastic Left Heart Syndrome is not a death sentance. There are options for the family.There was no reason to paint it as doom and gloom.If Hypoplastic Left Heart Syndrome was truly a death sentance like was stated on the show than many of the children and adults I know who have Hypoplastic Left Heart Syndrome would be dead.And they aren't.Get the facts right.
There are options that the show didn't even talk about(Or if they did talk about them we didn't see it and that's just as bad).

With Hypoplastic Left Heart Syndrome they generally go for the 3 stage operation.
1. Norwood at about a week old depending on the heart function
2. Glenn about about 6 to 8 months depending on the heart function
3. Fontan at about 3-4 years depending on the heart function

Some kids are not eligible for the 3 stage operation so they opt for a heart transplant.The problem with that is that there is a shortage of infant hearts available.Some patients have the three stage operation but still need a transplant in their teen years.
I know Private Practice has a team of physicians that they consult for storylines and maybe they need to find a pediatric cardiologist willing to help in cases like this.
Mothers who are pregnant with a Hypoplastic Left Heart baby need accurate information. There is hope for these babies even if the show failed to show that.

I truly hope that the letter and the postings will get to the right people. I'm still pretty steamed about the misinformation and I can only hope that the moms who are pregnant with HLHS babies don't lose hope because of this. There is always hope,

9 comments:

  1. You rock. Kudos for taking your knowledge and personal story to ABC. This is something that can't be brushed over as entertainment. Like you said, the story would have been just as compelling if they got the facts RIGHT. Thanks for being an advocate - and for showing the world HLHS survivors are out there and thriving. :) Annamarie, Eve's heart mom, Facebook.com/1in100

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  2. Great letter! Congenital heart defect awareness is so important. Having accurate info out there is also very important. Keep up the good work!

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  3. Great job! I'm glad you said something to ABC. :)

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  4. I've got a 3yo with HLHS. Thank you for standing up for him and all the other HLHSers, Alexis!

    Chris, Eddie's mom

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  5. Thank you for speaking up! I missed the show..thankfully or I would have probably been steaming, too. My 3 1/2 year old daughter is getting ready for her fontan in the next month.

    Here is our blog:
    http://kschmidtfamilynews.blogspot.com/
    You can access her carepage from the blog if you're interested.

    How old are you? There is a heart group from our hospital but I think as the children get older they are too busy to participate so I don't know anyone over 10yrs old with HLHS. It was nice to run into your blog :)

    Heidi

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  6. Heidi I actually don't have HLHS but I know a lot of kids who do and so that was what prompted me to speak up.Speak up for the kids who can't do it themselves.

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  7. Sorry I got your story a little wrong Alexia! I thought you had HLHS yourself, so I apologize if I stated it wrong anywhere. But you can sure see how many people are proud of what you did as a CHD survivor by getting the word out. Good for you! Thanks again, Annamarie

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  8. You ROCK! Great letter to ABC! Awareness starts with facts and special people like you standing up to right the wrongs!

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