Heart Month

It's heart month and I'm a heart mom, so the whole Valentine's thing, the colors pink and red, the little heart shape cut outs and general cheesiness of the holiday that honors the very organ my little girl only has half of -- has a taken on new meaning in my life.

I never knew this, but heart defects are the #1 birth defect.  How the hell did I miss that when I found out I was pregnant and started preparing to have a baby?  I, like everybody else I know, fretted and fussed as I got closer and closer to my 18 week ultrasound about my test results for down's syndrome, other chromosomal disorders they always talk to you about, whether the baby had all it's arms and legs, fingers and toes.  I never once thought about the heart.

I remember when at my 18 week ultrasound, at some general run of the mill hospital, they told me they couldn't get one of the ultrasound pictures they wanted.  I didn't think anything of it.  They didn't seem worried, so I wasn't worried.  They even asked me to walk around a little bit, stand on one leg and jump up and down, I guess trying to get the baby in the right position so they could get the picture they wanted.

I'd never been pregnant before, so I just figured the baby was in a bad position, it needed to move, and once it moved or finally settled into the right position they'd have the picture they needed and we'd move on.  Move on to more pressing issues, like do we want to know the sex of the baby-type issues and how fat am I actually going to get?  So, after jumping on one leg, peeing, walking around, doing all kinds of things to try and get that baby to move -- they decided to have me come back in a couple weeks for a level II ultrasound, which would most definitely get the picture they were looking for and likely the baby would be in the right position and everything would be fine.

That next appointment seemed like a bit if a nuisance more than anything so I told my husband not to worry about it and that I would go on my own and that way he wouldn't have to take off work again for another silly OB appointment.  So, off I went to the level II ultrasound during a lunch break at work.  Was not worried in the slightest.  The ultrasound tech did her thing, said she was going to have someone else review the pics and then she'd be right back.  Alone in the dark of that room, I definitely started to get a little nervous.  Could something actually be wrong?  I'm super healthy, I don't smoke, I don't do drugs, I've been eating like a total health nut, I'm working out, I'm like the healthiest I've ever been -- what could possibly be wrong?

When she came back she told me that a fetal cardiologist from Beth Israel who floats to outlying hospitals to review level II ultrasounds would be in shortly to talk to me.  That's when the panic set in.  He walked in, he sat down, and he told me that after reviewing my ultrasound, he was almost 100% sure that the reason they hadn't been able to get a "good" picture of the right side of the heart was because there wasn't anything to take a picture of.  The right side of my baby's heart was not developing.  She had half a heart.

I heard most of that but it was like a scene in a movie where everything slows down, his lips were moving but there was no volume.  I didn't even really understand what he meant.  Was it a death sentence?  Was the baby alive?  Did it die?  Was it going to die?  Was I going to miscarry?  Would I deliver a stillborn?  I couldn't even begin to fathom anything other than this ending horribly, horribly wrong.  At that moment.  I was convinced this pregnancy was over.  And if the pregnancy wasn't over, I was almost certain I would be the mother of a very, very sick and very, very disabled child -- at best.

And I was alone.  In my naiveté, I had come to this appointment by myself so as not to inconvenience my husband and his work schedule.  The doctor handed me a business card for the Advanced Fetal Care Center at Children's Hospital Boston and told me I needed to make an immediate appointment to be seen by them.  The next thing I remember was being in the elevator.  Stunned.  I couldn't even remember how to get out of the hospital and I had already been there a dozen times.  Once I finally found my way to the parking lot, I realized I had to call my husband.  What the hell was I going to say?  How do you even start that conversation without entirely freaking someone out who is thirty miles away and at work?  I knew the moment I dialed his cell phone number that in one way or another, this conversation would change our lives forever.  That this phone call, and what I had to tell him, would test the whole premise of our relationship and what our marriage was really about.

I told him something was wrong with the baby's heart.  That I couldn't even begin to try and explain it, I was crying so hard I told him I needed him to call the doctor who had just seen me in the ultrasound room and try to get him to explain it because I couldn't even remember what he had just told me minutes before.  I told him I didn't even think I could drive the two miles home to our house until I could remotely pull myself together.  He said to stay put, that he would call the doctor, call my parents, have my parents pick him up from work and drive him to where I was.  I knew that his heart was broken for me, knowing I was sitting five months pregnant in a parking lot unable to move, I knew he was scared for the baby and that under all that scary shit he was terrified for himself and what this would mean for our family we hadn't even started yet.

That was the beginning.  But the beginning turned into this success story.

And not that any one thing would have lessened the shock from that moment when I found out my baby had half a heart -- I can't help but think that if I was I was even remotely AWARE of how common heart conditions were -- maybe I would have been the teeniest tiniest bit more prepared?  Ok, probably not.  But still.  Hindsight is always 20/20 but when I found out that heart defects where the NUMBER ONE birth defect?  I just could not fucking believe that statistic.  How the hell is that possible when I had never even heard about if before?  If it's that freakin common, why the hell isn't anyone talking about it?  How did I miss this?  And it doesn't change the fact that my daughter's diagnosis is super rare and a fair amount of heart defects can either correct themselves on their own (how cool is that by the way?) or involve a minor procure once the baby is born.  But you can't deny the fact that you still see more social media around down's syndrome, cancer, and cleft lip.  And all of those diagnosis are super important too, but how did the heart defects not get to sit at the cool kids table and be included in the list?  Something's not right here...

So, in honor of this February's Heart Month -- Boston Children's Hospital made a video about it (I'm the one awkwardly bopping up and down too much and closing my eyes when I talk) and you can watch it here:

So, pass this video around to anyone you know who is pregnant or thinking about getting pregnant.  The more you know, the better -- right?

And when you do "pass" your 18 week ultrasound with flying colors like I did with my second pregnancy -- or when you are kicking back reading What to Expect When You're Expecting and starting to sweat the small stuff -- just take a minute to REALLY grasp what has to happen to make a healthy child.  And just reflect on how truly awesome and amazing it is that it goes right as often as it does.  Think of all the healthy pregnancies and healthy babies you know in your life and then multiply that by a gazillion.  How unbelievable is that?

I never truly understood the whole "every life is a miracle" thing until I had a sick child.  I am not a religious person but I have no problem bowing down to the unbelievable science, wonder, and general how-in-the-hell-does-procreation-freakin-happen-perfectly-over-and-over-and-over-again let alone the sheer amount of just plain old luck that goes into giving birth to a 100% healthy baby.  THAT is probably the most remarkable thing ever.

A healthy baby is quite literally a miracle of science.  And a sick baby, in our case, is as lucky as anybody else -- even with half a heart because of these ridiculously talented people.  Play the Heart Center video.  It takes two minutes, seriously, just do it.  Imagine saving people's lives who weren't born with the anatomy to live by figuring out a way to allow their bodies to work with what they've got?  My kid has half a heart and you couldn't survive with a diagnosis like that until these people decided:  Yes you can.  Try that for a 9-5 job.  It will make you question why you thought you had a bad day at work yesterday.

Happy Heart Month, everyone.  Hug the people you love and be sure to tell them how much you love them.  Because we're all miracles in one way or another and it took a hell of a lot of luck and crazy science to get us all here and on the planet in the first place.

No point in boohooing Valentine's Day.  Take full advantage of it.

xo