Adam McDade

Adam McDade

I will never forget hearing my husband ask the doctor “Why is he purple? Why isn’t he breathing?” immediately after Adam was born.

He was our third child, the other two were born healthy babies and we had no reason to believe anything would be different with Adam. However, he was quickly taken out of the room for testing. Within 6 hours of being born Adam and I had both been discharged and were heading to UF/Shands so that more testing could be done. Before they transported Adam they brought him into the room while he was in his mobile ICU. This little boy who I had not yet been able to hug and kiss looked very peaceful and content but the tubes, wires, bandages made for such an unexpected scene. Inside I kept thinking “Everything is going to be fine, the staff is just being extremely thorough but everything will be fine. He probably has a small hole in his heart, I’m sure we’ll be sent home with medicine and the hole will close on it’s own.”

Five hours after arriving at Shands, two doctors sat us down. “Your son has a severe heart defect.”

Oh, those words.

Those words were so heavy.

They told us Adam had tricuspid atresia. His tricuspid valve never formed and sub sequentially his right ventricle had never formed.

“Is he going to die?”
“Will we ever take him home from the hospital?”
“Will he ever meet his older brother and sister?”

Of course these questions immediately overwhelmed me, although I was too scared to consider asking. After the long discussion Adam and his anatomy all I could ask without being scared of the answer was “What advice can you give us?” As one doctor stared blankly I will never forget how the other popped in “You’re going to have three kids, you will love them all the same, one will just have a different heart.” And with that response I was immediately filled with hope. Hope that Adam wasn’t going to die, hope that we would take him home from the hospital and hope that he would meet his brother and sisters.

Adam was blessed with great anatomy as far as TA babies are concerned, he was able to skip what is typically the first of three procedures. On October 22, 2014, four days old, Adam was discharged with no oxygen, no medicine, nothing. We had weekly cardiology appointments and the plan was for him to have his first open heart surgery around 4 months. During this waiting period Adam thrived, he was doing a good job putting on weight and staying healthy.

At 14 weeks old he had his first open heart surgery, the Glenn. There were ups and downs but after just 6 days he was discharged. The surgery was tough, the days and nights post surgery were even harder. However, all of that was finally behind us and we were excited to live life with surgery behind us and Adam in a stable condition.

He will have another open heart surgery, the Fontan, when he is about 2 years old.

We feel so honored to be Adam‘s parents, this little guy is truly amazing.

Breaking News: NIH multi-centered research renewed!

The Pediatric Congenital Heart Association is thrilled to learn that the NHLBI has approved a renewal of the Pediatric Heart Network for another grant cycle.  It has been approved for a 7-year grant period, with a total budget of approximately $52M.  This research network supports the necessary infrastructure for multi-centered research collaboration. We look forward to sharing more information as it becomes available!

research matters

5 Things You Shouldn’t Say to a Heart Dad

The Pediatric Congenital Heart Association strives to empower whole families dealing with congenital heart disease.  That includes you, Dad.  Thanks, Chris for the great reminder! Dad, we’ve got your back and will strive to be more intentional!

Let’s just put it out there: for a long time Dads have gotten a bad rap in the media.  We don’t know what we’re doing, we can’t clean a thing, we only care about beer, and kids?  Well they just baffle us.  It all came to a head a few years ago with this epic Clorox ad:

DumbDad1

 

That, and another diaper ad where they tested a diaper’s strength by “leaving kids with dad” really started to change things and the portrayal of Dads is shifting from more Homer Simpson to dedicated, loving parent.  I’m all about poking fun at myself – heck, you’ve seen it on my blog countless times – but I also refuse to be labeled as incompetent.  When you throw a complex Congenital Heart Defect into the mix the result is a new normal.  So here’s a few things that anyone (both guys and ladies) shouldn’t say to a Heart Dad:

1.  Man Up

The idea of toughing things out and “being a man” totally doesn’t apply to a Heart Dad, I don’t care what you say.  I could’ve never dreamt up the things we’ve gone through with Nolan…and honestly, nothing could have prepared me for what we went through.  Being a Heart Dad is emotional (another traditionally “non-man” thing) and exhausting.  When it beats you down – and it will – it isn’t a sign of how manly you are.  Even though guys have a hard time showing emotions or asking for help, we do need a lot of support from others to make it through this.

Say this instead: “Dude I can’t imagine what you’re going through.  Let me know how I can help.”  Which leads me to my next thing…

2.  Let me know how I can help (but never help)

We’ve all been subject to this one: everyone wants to help, but how many people actually show up?  I’m not trying to sound mean or ungrateful, but there are times where – YES- you need that help…and where is everyone?  The offer to help is great, but good intentions don’t equal actual help!

Say this instead: “Hey man, I wanna bring you guys dinner: how does tonight sound?”  We sometimes have a hard time asking, so just offer!

3. Does this mean no sports?

Yep, you guessed it.  My life became a failure once my son was born with half a heart and probably wouldn’t be the Yankees centerfielder of the future.  Woe is me.

CmonSon

Believe it or not – and this will shock you – some Dads are about more than sports.  Fellow men: we’ve come to grips with the reality that sports probably won’t be a big thing in our home…and it’s alright!  So what if my son may not play baseball?  He’s alive right now and kicking CHD’s butt…and that’s what I want to cheer on.

Say this instead: “Bruh: your kid’s really doing this thing!  Awww yeah!” Or something positive and supportive along those lines.

4.  Guys don’t do that / Awww must be mommy’s day off

It drives me crazy when Dads get stereotyped but it also drives me nuts when Dads stereotype one another.  In this new normal, there could be lots of things you’ll start doing that maybe you’ve never done before: groceries, more cleaning, LOTS of laundry, dispensing medications, struggling through feedings, etc.  I can’t stand it when guys have this pre-set list of duties in their heads, as if it makes you less manly to wash a dish or two.  You know what?  Tonight I helped make dinner, gave 3 kids a bath, did a load of laundry, washed a sink of dishes, fed 2 picky kids and tube fed another, swept the floor, and picked up toys off the floor, and read the kids books before bed.  To me, that’s some manly stuff right there.  Guys it’s not enough to just bring home the bacon.  You need to pull your own weight *mic drop*

Oh wait, I’m not done.  For everyone else, please don’t trivialize a Dad who is out there trying.  It’s bad enough we had to see our kids struggle for life: I don’t need your fake pity in the grocery store.  Heart Dads do a great job of taking care of their kids…it’s not “Daddy is the babysitter” time or “Mommy’s day off.”  It’s called being a parent. *now the real mic drop*

Say this instead: “I don’t know how you do it, but you’re doing a great job!”  It’s not an ego boost as much as it’s simple positive affirmation.  This journey is new for us, and it’s new almost daily: we’re doing our best to get through it without our kids being all jacked up, so a little kindness towards us goes a long way!

5.  Nothing

This one is a toughie because I don’t think it’s something that’s done intentionally.  I’ve been on multiple CHD websites and facebook groups, and I often see posts for advice that feature the same wording “Hey heart Mommies” or “Any heart Moms out there know about…”

I know you’re not intentionally leaving out the Dads, but unfortunately it’s there and for awhile I would answer these posts with “Heart Dad here…” because I wanted to show that, hey…we know stuff too.  There are people out there who write “Hey heart families”…and kudos to them.  Again, I’m not saying you’re wrong when you write things to other Heart Moms…it’s important to have those connections too.  But part of why I started my blog was because there really wasn’t a lot out there for Heart Dads: I didn’t see a lot that was honest and humerous and written in a way that I could relate with.  And you know what I’ve discovered?  There’s A LOT of Dads out there who are looking for the chance to have a voice too; they’re looking for the chance to be connected and have a seat at the table.  We don’t want to be portrayed as the dudes in the background who help out every now and then…we want to be a major player, and we can be!  Sometimes you just have to remember to leave room for us at the table.  I appreciate every Heart Mom out there for giving birth to our Warriors, for being nurturing and kind and for keeping us all going without running into traffic.  Heart Dads: you’re important too, and we’re all in this together.

Say this instead: “What do you think?”

BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

 

Be The Forest

One of the founding principles of the Pediatric Congenital Heart Association is collaboration.  We recognize that it takes a strong network of people to succeed, whether it is advocating, educating, or simply just making it through the day.  As Chris describes, we all need to be part of the forest.

ShakingHands

I’ve said it once and I’ll say it again: Heart Parents are strong.  There’s something about the combination of worry, knowledge, lack of sleep, and ungodly amounts of caffeine that make us nearly superhuman.  There’s no one tougher than us and our kids, right?  I like to compare our kind to the mighty Redwood tree.  You look at them and are amazed at how big they are and how strong they look…they’re a marvel of nature.

Despite our ability to kick into beast-mode nearly at will, there are in fact times where we stumble and fall.  We get stressed out, we burn out, the hospital bills arrive, the van breaks down, your kid threw up his entire feed…AGAIN.  Sigh.  And suddenly we go from Redwood to dandelion, just ready to blow away at the next little thing.  You ever get this feeling?  Or is it just me?

ALittleHelp

Here’s an amazing fact: I read somewhere recently that while Redwoods are absolutely gigantic and look so very strong, they actually have a very shallow root system.  That seems absolutely insane, considering how huge those trees are, but it’s true.  The powerful thing I learned from this is that while Redwood roots are shallow, they extend outward to support one another.  This keeps them from starving, this keeps them from blowing over in the winds and storms…each other.

Please realize, Heart Moms and Dads, that despite how alone and frustrated you might feel on any given day, you’re not alone.  Not at all.  Reach out and find someone to talk to, someone to hear your gripes, someone who will support you because they’ve been there.  Look into your local community for heart families to connect with.  Use social media: there’s tons of groups out there too.  You’ll quickly find there are people out there just like you, no matter how messed up you may feel.

And when you’re on top of your game and feel like you’re rolling along, then you should reach out and help someone else.  There is an estimated 2-3 MILLION people living with a CHD…and their parents add to that number.  Think about what difference we could make if all of us reached out to help one fellow CHD parent.  Think about it.  Use what you’ve lived to help someone see the sunshine…and when you’re in that dark place – and you will be – someone will be there to help you.  A fellow guest blogger here with PCHA put it perfectly: this is a marathon, not a sprint.  I will say that during this marathon ALL of us will stumble, and when that happens will you be the one to stop and lend a hand?  Will you find yourself without a hand to hold?  I hope not.

For some of you this is very challenging: it requires you to reach out of your comfort zone and maybe rip open some old wounds.  When you do that, though, you will help others heal.  For some of you, the help starts with you.  You know how the saying goes, you should love your neighbor as you love yourself…but I’m willing to bet there’s some of you out there that I don’t exactly want loving me based upon how you love yourself.  Ouch, I know.  But it’s true and you know it.  You’re doing a great job, Heart Mom and Dad.  Keep it up and keep running…keep your hands outstretched to help others.

Let’s be that mighty Redwood forest together…because it’s more than one tree, it’s all of them working as a team to support one another and survive.  Do you want to see more CHD research?  Advocate for it together.  Do you want to give the best care to your heart warrior? Work together.  Do you wish to one day see the end of CHDs?  Fight for it together.

There’s an African proverb that sums it up best: “If you wish to go fast, go alone.  If you wish to go far, go together.”

Be the forest.

Redwoods

BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

 

“I am Conquering CHD.” You can, too!!

1000 advocates

1000 advocates in 30 days.

We can do this!

Help us “Conquer CHD”

Click here to become a member of PCHA’s advocate network, today!

Why?

We need you.  Advocacy works.  It has increased federal research funding. It has helped expand CHD data collection to include people of all ages. It has raised the transparency discussion to a national policy level.  It has increased awareness of CHD in Washington D.C.  Advocacy works.

In order to have a bigger impact, we need everyone to come together with one voice!

Your experience with CHD is a powerful tool.  The key to success in bringing about change on a local or national level is to provide a personal connection to an issue. For this reason, through our grassroots efforts, PCHA is bringing the community together to share their stories and strengthen the voice of CHD.

Our advocates are the most effective resource for making changes on Capitol Hill, with government agencies, other national policy makers and even with-in their own hospitals.

Being a part of the Advocacy Network is easy.  Being part of something bigger makes a difference!

It’s Free!  You are under no obligation to do anything.

As an advocate you will benefit from:

  • regular communication to help you stay up to date on what is happening in the CHD policy world
  • access to resources to help empower you to share your story
  • alerts to when urgent action is needed
  • personalized opportunities depending on local and regional needs

By signing-up, you are joining a community of patients, parents, families, friends, nurses and doctors all committed to conquering CHD. Be a part of something bigger. And tell the world “I am Conquering CHD!”

Please sign-up today and use and share these badges to help us reach others.  Let the world know that you are doing your part – you are Conquering CHD!

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