Heart to Heart

Well this isn’t the post I thought I was going to put up tonight.  In fact, please excuse me while I just spill words on to the screen, I’ve been thinking about this all day.

This morning I checked out Help A Mother Out’s latest guest blog post. Bad idea. Well, at least if I wanted to get through the day with out breaking down and deteriorating into huge big sobs. Luckily, I didn’t have many students in my office today. Good idea for a kick in the behind.

The post is by a young woman called Kristine. Recently, Kristine and her husband marked one month since the birth of their beautiful daughter Cora by dropping of all the diapers they had stockpiled for Cora at a homeless shelter. Now given that in the past year or so Kristine had recently been laid off and the economical crisis had impacted Ben and Kristine to the point where they had to turn to family for shelter, to WIC, food stamps and Medicare to get by, what on earth were they doing dropping off the diapers?

At just five days old, Cora died in her mother’s arms, the result of an unknown congenital heart defect.

“We brought Cora home on schedule after two days. I woke up every few hours in the night to feed her. Five days after she was born, we had a feeding unlike the others. One minute she suckled sweetly from my breast, the next moment her face was covered in blood and she wasn’t breathing. Cora died in my arms…”

It has been just a month since Cora died and yet in the midst of their loss Kristine and Ben have reached out. They have reached out to help other families hurting in this economic crisis, reached out to raise awareness about heart illness in the young, reached out and in their grief and in Cora’s name are helping others.

I can’t pretend to know what it is to lose a child; I hope never to feel that. I can’t pretend to know another’s grief. We all grieve differently. I know what it is like to lose my only sibling,  my brother and to watch helpless as my parents grieved and grieve. This and being a parent is what I draw upon and why their experience shakes me so.

My fine, brilliant, funny brother fell victim to sudden cardiac death. He was 24 years old.  After he died, nearly 15 years ago, I did nothing so noble as Kristine and Ben. I was a little wild for a while and probably more than a little depressed. I had good friends and they saw me through the bad time. Two and a half years later I had a cardiac arrest, idiopathic ventricular fibrillation. In other words the doctors had no idea why, but chances are my brother’s and my events are connected.

Now, I’ve raised money for the American Heart Association, I’ve talked to other people and held their hands when they’ve been presented with worrying heart diagnosis. I’ve gone on and lived life, but nothing like the action that Kristine and Ben have taken on. Given their actions I think right now I need to give a little time to honor Cora and my brother.

Kristine and Ben are trying to raise awareness about congenital heart defects, and cardiac risk to the young and I believe it a very worthy cause. So this is what I’m going to do over the next few weeks to support their efforts.  Using the Congenital Heart Information Network suggestions that Kristine links to in her blog, I will:

  1. Write a letter to Governor Jan Brewer of Arizona and to Mayor Walkup of the City of Tucson asking them to proclaim the week of February 7th-14th Congenital Heart Defect Week.  I will do this by the end of this week and will post the letter to the blog. I hope that any readers of my small blog might do the same.
  2. Post in my office  information about the need for research and action on cardiac risks in the young and signs & symptoms of cardiac issues. The majority of the students I work with will go on to do basic science research, including that which contributes to medicine or go into the medical field. They are the next generation of researchers and health professionals. They need to be cognizant that heart issues are not the sole dominion of white, middle-aged men.
  3. Write to my state representatives urging them to maintain and increase basic science research and education funding so that we may address these medical issues. Encourage them also to actively support meaningful health care reform so that all have access to the products of such endeavors.
  4. Take brochures from the CHD Network to my daughter’s preschool to be distributed to parents and care givers to raise their awareness. I’ve ordered these online.

I hope to write a letter to our local press also, highlighting the upcoming awareness week and sharing our story. Perhaps during the 3rd week of January which marks the anniversary of my cardiac arrest.

Finally, my daughter will turn three on Valentine’s Day and we will have a party, complete with a jumping castle, mounds of cakes and balloons. Somewhere in there we will honor Cora, my brother, and do a little raising of awareness about cardiac risk in the young. Suggestions gladly accepted.

My thirty minutes are more than up. I’ve spilled my guts. I hope it made sense.

Kristine, Ben, and Cora,

Thank you,

Tepary

A very delayed update. I did write to the Governor. To no avail. I think I’m going to go for my local city government. I did share with my students and still have pamphlets in my office from the congenital heart group. I continue to harass my state representatives about the importance of science. I have not taken the pamphlets to the preschool. So, I have some things to do.

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5 Comments

Filed under Acting Up, Heart

5 responses to “Heart to Heart

  1. Pat

    This is a really sad story. CRY in the UK (Cardiac Risk in the Young) has been very successful in raising the profile of heart disorders in the young. Although there are still issues with coroners. One of the areas CRY has focused on is in demanding increased heart screening for all young people. Initially they are concentrating on those involved in sports and the quarterly news journal reports on this and other issues.

    Their current information postcard campaign is based on 12 young people a week dying of sudden cardic arrest. 15 years ago, it was just 8 a week. So greater awareness is obviously identifying more.

  2. Thank you so much for the kind words. Cora changed my life. Those were the happiest five days of my life. They only option I had were to keep spreading that love! Speaking of the Valentine’s Day party with your daughter, I’m working in a group called 1 in 100 to organize 100 parties to spread CHD awareness, a party can be as simple as you and your daughter. Look for several more ways to get involved soon!

  3. LT

    Tepary, this is so very awesome and inspiring. Kristine, let us know once you have a badge/button we can put on our website. xxoo

  4. Sobbing at work, probably should have waited to read this at home. Thank you for sharing.

  5. Tepary, I look forward to helping you plan a Valentine’s Day birthday party that honors your brother and Cora and raises awareness of heart issues.

    On ne voit bien qu’avec le cœur.

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