Friday, June 27, 2008

Thinking of Truncus Arteriosus and Other Heart Babies Today

Our journey began, as you know, in January 2005 when we learned that our unborn baby, then named "Sprout," had a rare heart condition called Truncus Arteriosus. We tried finding information and support on the internet and simply came up empty-handed. Even the national organization Mended Little Hearts didn't yet have a Chicago chapter.

So, I started the blog. I wanted to share our experience, which I had chronicled for months in emails, with any parent who might benefit from it. I wanted to write a memoir, Charlotte's memoir. And, yes, I hoped that maybe a publisher might find me.

As Charlotte's heart healed beautifully and without complication, her journey quickly became one through the discomfort of reflux and feeding issues, with a minor detour to plagiocephaly (remember the helmet photos?!).

And now, if you read the comments, you'll find that parents of Truncus Arteriosus babies have found us. And one Truncus Arteriosus "baby" herself. I'd like to introduce you to them.

Jessica is 21-years old and lives in Michigan. Today, as I write this, she is having her third TA repair. I'm in awe of her, actually. We have been told that by 21, Charlotte may have had 4 surgeries. Jessica's valve and conduit have lasted for 18 years! As she waited for her pre-surgery exam results, Jessica wrote me a beautiful email about the things she was scared about, things Charlotte should know before her next surgery when she'll be old enough to understand. And the things she's looking forward to. Jessica's poise as she awaited surgery moved me--she was thinking about being nude and exposed, with all her private bubbles out as she said. She's done a lot of research, so she was also thinking about all the tubes and wires that will greet her when the anesthesia wears off tonight.

As we light our Shabbat candles tonight, we'll be thinking of Jessica and wishing her quick and peaceful healing. When she's well enough, Charlotte is going to visit her in person so they can compare scars.

Caden's Mommy Ashlea found my blog today. I've just spent Charlotte's naptime reading Caden's story and marveling at Ashlea's profound prose. Caden's 18 months have been one mircale after another. You can read his story on his blog. I recommend you start with Ashlea's essay, Caden Konecny: Caden's Feet. I wish I'd written it.

And finally, but not least, is Josh P., Francie's son. Josh is not a TA baby; he has complex congentinal heart disease and recently had a Fontan procedure. We're hoping that he is healing well and that his parents and little brother are doing well, too.

Ashlea has created a list of links to other TA babies. Please visit them.

And keep Josh and Jessica in your prayers.

5 comments:

Caden said...

Thank you for commenting. It means a lot when other people are helped by something our family has been through, and we are so happy to be able to offer that. I'll add your link to his page so that more people can hear your story too. It's therapeutic!

Yes, we are having another… in January. We are anxiously awaiting the fetal echo in a couple of months!

Ashlea

Seth, Caralee and Sydney Jo said...

Hi! I just stumbled onto your blog from Caden's, my 18 month old little girl was also born with Truncus. We didn't find out until she was two weeks old, and spent about 5 weeks at Primary Children's. It is so great finding all of these Truncus kids. For the longest time I felt very alone, with my only child being a heart baby, its great to find other family's struggling with the same things, Charlotte is so cute love all that curly brown hair!
Caralee Baker
check out our blog@sydneybaker.blogspot.com

Eva Abdullah said...

I just found your blog...thanks for sharing your journey with us...
I had my 19 week ultrasound yesterday and they think my baby has this heart defect as well...I go to see the pediatric cardiologist on the 22nd.
It comforts me to hear others stories, so I am not alone and can see what I might expect.

djc974023 said...

So I'm 20 and my wife is 19 she just had our first son on Saturday 05 November and that's web we found out he had Truncus Arteriosus he was airlifted to children's hospital and he had his surgery yesterday and it went well there thinking about closing up his chest tommoro I'm glad I found your blog today

Nikkimom4 said...

My husband and I are pregnant with our 4th boy. I'm 5 months along and we just found out yesterday that your baby has TA and will need surgery after birth. Please someone tell me what to expect? I feel left in the dark. Email me at nicura.myers@yahoo.com