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Baby, I Was Born This Way

Jan 12

Posted by: ACHA
1/12/2012 3:01 PM  RssIcon

By Alissa Butterfass

On my first date with my husband, he took me to a restaurant on the Upper West Side of New York, we discussed his upcoming vacation, and he told me he loved to cook homemade pizzas and apple pie (both of which he wouldn’t cook for me for nearly a year, by the way).

But this post isn’t about my first date with my husband. It’s about the last first date I had before I met my husband.

Coincidentally, it took place at the same restaurant. But more relevantly, it was with a cardiologist who I’ll call Dr. J. Great, I thought. We had an automatic topic of conversation. How could I not share that I was born with TGV? How could I not ask if he knew any of the many doctors I had seen over the years? It’s been more than ten years so I don’t recall everything we discussed that night—and it definitely was more than just my heart—but I do remember that it was he who told me about an emerging medical specialty to treat adults with CHDs. He even gave me some names to look up (So, thank you, Dr. J!).

When I told someone about the date the next day, she couldn’t believe I had talked about my heart condition on a first date. To her, it wasn’t first date material. She told me that I’d never hear from him again—which turned out to be true.

But here’s the thing about having a congenital heart defect. I was born with it. I don’t know life without my heart condition. It is as much a part of me as my blue eyes, my being left-handed and my love of chocolate. I tend to be a pretty open book to begin with, so it’s just not in my nature to filter my thoughts and conversations in that way. It’s not like I talk about my heart condition all the time or randomly bring it up at cocktail parties if it’s not relevant to the conversation at hand. But I was sitting across the table from a cardiologist, for goodness sake!

(And let’s just forget for a moment the fact that my body is covered with scars, so at some point if I am going to get physically intimate with a guy, I’m going to have to tell him, right?)

So, when is the right time to tell someone about having a heart condition? More than ten years later, I still think about this first date and still believe that it is never a good idea to feel like you have to hide something or that your condition is something to be ashamed of.

Sure, it may make some people uncomfortable, which is never my intention. I’m not trying to throw my medical condition in anyone’s face or make them feel bad in any way. But how or why would you keep such an innate part of yourself a secret?

What are your thoughts? Any stories to share, good or bad, of telling people about your heart condition?

PS—Years later, a friend of a friend ended up dating Dr. J. I heard he was a jerk to her, so his leading me to a cardiologist who specializes in ACHD is probably the best thing I ever would have gotten out of a relationship with him anyway. And, my very next date was with my hubby! Happy ending!

Alissa Butterfass was born with transposition of the great vessel, which was corrected with a Mustard procedure at age 2. In addition to being a mom, wife, daughter, sister, friend, wannabe author and chocoholic, she works part time as a senior marketing manager at a Fortune 500 company and volunteers as the Co-President of her local chapter of a nonprofit organization.

Location: Blogs Parent Separator ACHA Blog

13 comment(s) so far...


Re: Baby, I Was Born This Way

I have AV Canal, and pulmonary hypertension, and the fact that I need to wear oxygen kinda makes it necessary to talk about my health on a first date. I've been on a few dating websites, and I always include pictures of me wearing the o2, because it helps weed out the people who don't want to get to know ME, just want to know why I've got the tube up my nose! I am always honest with my health because it's not something I can just ignore. I'm a pretty open book!

By Colleen on   1/12/2012 4:19 PM

Re: Baby, I Was Born This Way

Way back in the when I was dating, I was always very upfront about my heart condition. I did not want to put any effort into a man that could not love me for everything I am, and a few extra parts (pacemaker and leads)! I remember meeting my husband and that being one of the first things we talked about. He was very interested in my heart condition and very accepting. He has tried to learn as much about it as he can.

By Rebecca on   1/12/2012 4:42 PM

Re: Baby, I Was Born This Way

I was misdiagnosed until I was 43 and near death from a VSD gone awry. I was so in denial that anything was wrong with me, that I remember looking down at the post-surgical incision thinking: "Holy cow! There really was something wrong with me!" I grew up thinking the inability to catch my breath in P.E. was some sort of character flaw that the other kids had the self-discipline to overcome. Now that I know: I TELL EVERYBODY!!! AND, I HOPE THEY FEEL GUILTY!!!! (O.K., so maybe I do have a little emotional baggage. At least I still have a sense of humor.) However, having been "born this way" I do get tired from the endless cardiological question: "Do you feel breathless?" Seriously, I don't know. I feel the way I ALWAYS feel. What is up with that question?

By Joanna on   1/12/2012 4:53 PM

Re: Baby, I Was Born This Way

I really enjoyed this post. I feel the same way about my heart condition being as much a part of who I am as my eye color. It's how I was born, and my parents found out about it when I was a toddler, so I've known about it since I could talk. One reason I fell in love with my husband was because entering the unknown didn't scare him. Also - he thinks my scars are cool, that they prove I'm a fighter and survivor.

By Jen on   1/12/2012 5:30 PM

Re: Baby, I Was Born This Way

Wow, you went on a date with a cardiologist? I think this part of the story blows my mind more than anything else. I just can't imagine having the patience to deal with his professional crap at home.
I have nothing more constructive to say, sorry. No stories that come to mind. It either worked out or didn't and lucky me the guy I am currently with wasn't scared off ;)

By Rachael on   1/12/2012 5:36 PM

Re: Baby, I Was Born This Way

I was diagnosed with Coarctation of the aorta when I was 9 months old, and I was not told until I was 11 years old, about 2 months before I had surgery to correct it. My parents were afraid I would use the defect as an excuse not to try sports, or be lazy, and they also weren't sure how to tell their only biological child she might die at a very young age. So they told me nothing. Then I had the surgery, and was told I was fixed and didn't need to think about it until I was a gray haired old lady. Wrong! Last year, age 44, I learned I have bicuspid aortic valve and stenosis. More surgery looms in the near future, and I will have an artificial valve and blood thinners to deal with. So much for fixed. Now the husband wants me to lose a bunch of weight and get in shape so I can "bounce back" after the procedure. So I think of this every day, and fret, and hate my body.

By Valarie on   1/12/2012 9:02 PM

Re: Baby, I Was Born This Way

@Colleen - amazing. Good for you!
@Rebecca - sounds like a good guy
@Joanna - love the sense of humor.... So important. Did you see my last post?
@Jen - Thanks. My parents found out when I came out of the womb blue. My mom likes to joke that they were either going to name me Alissa or Ultraviolet.
@Rachel - Everyone has professional crap... I know I do, my husband does, etc... not sure why a cardiologist's would be any better or worse to deal with than others?
@Valarie - Good luck. Sorry to hear you hate your body. I've never felt that, except maybe when trying on jeans and bathing suits! (Apparently being a chocolaholic makes it really challenging to be skinny!!!)

By Alissa on   1/12/2012 11:50 PM

Re: Baby, I Was Born This Way

Alissa, Thanks for writing this post and bringing up the topic of when to tell others about our hearts, and in particular when do we tell our date. I feel it's important to tell them as soon as possible, even if it may not be discussed in full details on the 1st date. And also be ready for some of their questions. One person, whom I was attracted to, had known I had a heart problem, he even came to see me in the hospital, and after I was released and after I was well, he invited me to join him for dinner with his sister. On the way to dinner, as we walked, he asked me straight out, "Can you have children?" Well, I wasn't prepared for that question so soon. I think I said something like, "The doctors don't advise it." But now, I would know how I would have answered it, like how many children do we need to make in this world, with so many children already here and need a family and home. But his question was a legitimate concern. And we as persons with CHD should also know what we want, need, and are concerned about in a relationship. What are we willing to compromise and what we won't compromise. I know this now, and it's easy to say now, but trust your instincts.

By Stephanie on   1/13/2012 1:40 AM

Re: Baby, I Was Born This Way

That sounds like a very hard situation! If someone really really loved you, they wouldn't leave just because of health issues. They would stay by your side :) Someone who is worth it will not ditch you over something like this.

By clarissa on   1/13/2012 3:03 PM

Re: Baby, I Was Born This Way

I am so happy to read this topic. I am a 32 year old female still looking for that special someone. I always tell men upfront about my condition, because I have been hurt so many times in the past. My mother thinks its no ones business until you start to get serious. But I know thats not the case. I have had men stop talking to me because of my condition, and this just tells me they aren't able to deal with adult situations. So I know my mother is wrong. You have to be upfront in the beginning, why develop feelings to be hurt soon after.

Ps Clarissa...
I had a man ask me the same question. I responded with it wasn't advised, and I'd like to adopt. Well he wants a BIOLOGICAL baby and I wasn't right for him. This person didn't even take the time to think about a surrogate, or anything else that could work, for us to be together and him have his BIOLOGICAL child.. Sometimes I think men are evil....

By Kelli on   1/14/2012 1:13 PM

Re: Baby, I Was Born This Way

I gotta get use to all this dating stuff all over again. At 43 I was diagnosed with isolated left ventricular non-compaction and the girl I had been in love with for five years ..well we broke up. It is not her fault nor mine.

But now I think I will be very forward about this condition. Now that I know about it

By Winston Bracken on   1/16/2012 10:11 PM

Re: Baby, I Was Born This Way

I'm with you, Alissa. My heart condition is a part of me, and I'm not going to think twice about mentioning it if the conversation happens to be going in a direction where bringing it up seems natural to me. I too have scars and an ICD that bulges in my upper chest wall, so it's not like I can hide it anyway. I can't remember what conversation I had when with my husband, but he knew from the beginning about my heart condition (Tertology of Fallot), and never had a problem with it. Thanks for sharing your story!

By Andrea Buginsky on   1/18/2012 1:19 AM

Re: Baby, I Was Born This Way

Wow, I am so glad someone wrote about this and I read all of these responses. I recently was talking to my mom about when is the right time to let someone know about my heart condition is. My brother who is 20 says you should let them know everything right away, lay all your cards on the table. Then he tells me I let people know that my sister has a heart defect and that my mom has an auto immune disease and my family comes first so if they dont understand that then they aren't for me. I definately applaud my brother for that and feeling so strongly, but he has a hard time understanding why it is even a question for me of when is the right time to tell someone. I try to explain to him that it is a little different for me because I am the person that actually has the heart defect so it is different for me. Do I make any sense in saying this? After reading all of these responces from everyone my opinion has changed I am going to think a little bit more about telling the next person I date sooner than later. I guess it would save me from getting hurt like I have a few different times after letting the guy know. Its just hard for me sometimes cause so many of my friends are married or have kids and I feel like wow Im coming up on being 30 soon and im still single, and as an ex told me before, getting involved with me takes alot because my heart defect is baggage :(

By Mallory Kanipes on   5/16/2012 8:04 AM

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