Home of the Four Trans

A not-for-profit organization called California Heart Connection hosts a picnic once a year for the last 9 years as a way to bring together  Southern Californian heart families to exchange practical and inspirational information about their experiences. The founder of this organization has a child with Hypoplastic Left Heart Syndrome.

I am so grateful for her efforts in organizing this event because the event not only allowed the parents to create contacts with one another, but it also allowed the children to interact with others that have had the same experiences as them.

At Justin’s age (22 months), he cannot quite comprehend the trials and challenges that he’s faced, already, in his tiny life. Also, it is true Justin fashion to flash his signature squinty eyed smile and wave, even to strangers; he’s just a happy, go lucky kid. So, I suppose being among other heart kids doesn’t quite faze him at this point in his life. He just wanted to play. For example, while sitting on a floor mat surrounded by miniature cars and airplanes with Nathan, he noticed another child plop down on the mat across from him. He hurriedly scooted over to make friends. Now, the funny/sweet thing about this interaction was the way Justin tried to catch this other boy’s attention. Because he cannot quite produce “real” words, yet, he just sat there cocking his head to one side, and sticking it into the boys face, all the while grunting, “m, m, m,”  to get the boys attention. He also picked up a toy and tried to give it to the boy; sharing is his other method to make friends.

As his mom, it was nice to see him play with other kids his age that stand about his size, and not towering twice over him. It was nice to talk to other parents that inherently understood the underlying worry and issues that come with having a child with CHD, and not have to worry about the other person feeling sorry for you or your kid. It was nice to see that we aren’t alone. 

Nathan also enjoyed his time putting, and running around on the playground.

We met single ventricle women two in their twenties, one of them married, one in her fourties. We met children and adults who had pacemakers. We discussed surgeons and specialists, medications and treatments, insurance and government aid. We (2 other heart moms and I) decided that our children, who are about the same age, will go to Camp Corazon together.

I did not meet one family whose child experienced a stroke, though.

Here are some heart family quirks I recognized at the picnic:

One mom pointed out the chubs in her son’s leg, and was so proud because he had been eating so well while on an appetite stimulant (like me and Justin!).

Another tentative mom discussed a leaky valve that her son has that has gotten worse (like Justin’s had prior to OHS 2), causing his O2 sats to drop, which will require surgery to remedy (Justin’s leak cannot be fixed, but alleviated with medications).

Another mom cried because she felt lost, not knowing what to do with her insurance situation, and finding the best medical care for her daughter (at one point or another, I think heart families agonize over this detail in the grand scheme of CHD).

Parents of a 14 year old boy with a Tetralogy of Fallot diagnosis just discovered the syndrome connected to his heart condition through genetic testing. After years of learning disabilities, speech impediments, and developmental delay, they finally found out why (although Justin’s heart is the greatest concern to his health, it frustrates me that his doctors use his heart as the culprit for many of his ailments). 

I got a glimpse of CHD from the patient’s perspective:

They don’t remember the surgeries they had as kids.

The 14 year old boy with Tetralogy of Fallot had his last surgery at 9, and does not remember anything about it, other than he had the surgery.

A twenty something woman remembers how many procedures she’s had in her lifetime (11), but does not actually remember her surgery.

The don’t resent their parents.

I met a CHD patient in her twenties, who is now a nanny for a CHD boy. She described how sad it is for her to have to hold down the boy when he needs to get a shot. But, she doesn’t remember that her parents had to do the same to her when she was little.

They think, “Whatever, Mom.”

One patient’s mom explained to me how she worries about her daughter riding on a bicycle because she has a pacemaker in her abdomen, and if she were to jam herself against the handlebars, it would not be risky. The patient just waved her hand at her mom as if to say, “Whatever, Mom.”

By the end of the four hour day, the kids were getting restless for their naps. We gave each other hugs, and exchanged phone numbers and email addresses. All in all, it was a fruitful day, I thought. We met some wonderful, inspiring people.

This entry was posted on Thursday, June 11th, 2009 at 1:24 am and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.