Conquering CHD

@conqueringchd | contributor
CHD is the most common birth defect and a leading cause of infant death. In 2021, 40,000 babies will be born with CHD in the United States alone, joining the 1.35 million new patients born this year around the world. 1 in 100 people worldwide are diagnosed with CHD. Thanks to advances in medical technology and surgical procedures, more adults than children are now living with congenital heart disease. CHD is a chronic, lifelong condition that presents significant challenges for the patient and their family. CHD has no cure. Conquering CHD (formerly Pediatric Congenital Heart Association) exists to conquer the most common birth defect. We engage, listen, learn, and act. We create visibility and empower all impacted by congenital heart disease, accomplishing this through awareness, knowledge, community, and research. Visit our website at www.conqueringchd.org.
Conquering CHD

Navigating the Adult Healthcare System With Congenital Heart Disease

No one wants to be in the hospital. No one wants to think of one as home. Unfortunately, for many people with congenital heart defects/diseases and our families, that’s what hospitals often become, a kind of home. We’d all rather be snuggled in our own beds, watching Netflix and not the hospital-approved programming. But for many adults with CHD, the fluff of the pillows isn’t the problem. You’re not supposed to like it. It’s a hospital. You’re supposed to heal and go home. But while you’re there, shouldn’t you feel as if you’re in the right place? A place equipped, a team prepared for you? A center that acknowledges your sub-specialty? As an adult, I have been admitted to and visited clinics of both pediatric and adult centers. And there are pros and cons to each. But we don’t really talk about the difficulty both have in fully serving the adult congenital population. There’s a discomfort in being the oddity in an adult hospital, a fear in being where CHD is not well understood, where you’re the youngest patient on the floor, in the waiting room. Often for the first time, overnight guests aren’t welcome, and the nurses have never heard of your condition. Neither has the physician. How could they treat it? The weight of your collected medical trauma does not burden the medical team, but rather it’s discarded, disregarded, dismissed. You’re just another disagreeable patient. In a pediatric hospital, nothing is meant for you. You’re always the oldest patient on the floor, in the waiting room. Parents holding tiny babies looking at you and you wonder “are they wondering why I’m here?” Cartoons, bright colors, and doll-sized chairs tell you kids belong here. You’re not represented on their website or in the halls, and when making appointments they ask, “What’s your child’s birthdate?” Each time, you reply, “I’m actually the patient.” Practical issues arise as well, they may not be ready for your height or weight, and if an organ that’s not your heart needs some attention, they don’t have the staff. You feel as if you don’t really fit in either place. Then add the complication of not having enough Certified Adult Congenital Specialists to go around. Adult patients are forced to travel farther, where they may be removed from the support of family and friends, or hop from hospital to hospital as their doctors leave. At age 31, just eight years ago, I started seeing an ACHD Specialist for the first time. I will be starting on my fourth new physician in so many years. Getting used to a new system, a new clinic, a new set of faces, once again. All while trying to manage my health and the worry that something might go wrong because I have a new team that doesn’t know my background. Adults with congenital heart disease are a displaced population. No one really seems to know what to do with us, they can’t agree, or they don’t want to make the investment. It’s a frustrating struggle, and I don’t have all the answers, but we have to keep raising our voices until we are heard.

Conquering CHD

Don't Compare Parenting a Child With Complex Medical Needs

Heart Dad and Pediatric Congenital Heart Association (PCHA) Blogger, Chris Perez, talks about the tendency to compare our journeys to those of others and his struggle to move past judgment. My friends, this is a challenging post. It’s something I’ve struggled with from time to time and something I’ve seen and heard from others, too (not to judge). I remember the day pretty clearly: someone I worked with at the time came into my office to talk something work-related. As I was looking up what she needed, she asked how everything was going at home with Nolan. I was a bit taken aback at first because we were months into this incredibly difficult journey and it was the first time she’d ever asked about him. At this point in my son’s life, managing his health and watching how difficult life had become for him was a struggle. He was on a feeding tube, and we were up all hours of the night giving meds and trying to sort out the obnoxiously-beeping feeding pump. I wasn’t sleeping, I was fried, and it took everything in my power just to get to work, much less complete my tasks. Of course, I didn’t go into all that; I just talked about appointments, feeds, meds, therapies, etc. Then she said something along the lines of, “It just reminds me of when I had to take my daughter back to the hospital for a few days for jaundice and I just couldn’t handle it,” and then she started to cry. Outwardly, I remained passive. My brain, however, was like: The nerve! The nerve! To quote the Grinch, “The unmitigated gaul! ” I was flooded with this sense of anger, like “How dare she compare jaundice to what my son has been through? His chest was open; he was on a vent; at one point, he coded, for god’s sake! And you’re c rying?!” Since then, I’ve realized this tends to happen to me a lot: “you don’t know what tired is, bruh,” or “that’s not scary, this is scary.” It’s like I have some sort of measuring stick I use to compare people’s struggles against mine, and I also determine whether those are valid or not. It’s like a contest in which I win because my struggles are worse than yours. Yikes. That’s not cool, to be honest. Do you do it, too? Now before I go on, I need to establish that this doesn’t make you some kind of failed or broken person. In fact, I’ve found these feelings are at their height when I’m feeling compassion fatigue. But I also need to say this here, and say it loud: our struggles, traumas and challenges are not a contest! If it were a contest, what do you win? Is there some prize? No, because guess what – your struggle is still there. And when you dig deeper, there will almost always be someone with an even worse situation than you. OK, so open-heart surgeries definitely aren’t easy to handle, but what about the kids who are coming home with even more debilitating disabilities, or what about the families who lost their child? When I think of it that way, I feel terrible because while I’m raining down the “my trauma is worse than yours” attitude on others, I realize others can do that to me… and if they did, how would that make me feel? Pretty lousy. So, what then? Friends, I feel like the power we have over this kind of thinking is to use empathy. I write a lot about empathy because I think it’s critical to changing the world and helping our own mental health in the process (you can read more about it  here ). Oftentimes, empathy gets confused with sympathy, but they’re different. Sympathy is that natural feeling you get when you see someone struggle or you hear some sad news. That’s the response we get from people when they hear how difficult our journey is… but it’s also the source of this “contest” we tend to hold with others we deem as not struggling as much as us. We want sympathy, but won’t give it. So why empathy, then? Empathy is understanding what someone is going through because you’ve been through it, or simply putting yourself in someone’s shoes to understand. You see, we want people to do this for us, but why won’t we do it for others? Think about when you found out about your kid’s congenital heart defect ( CHD ) . If you’re like me, you knew nothing about CHDs before that… it was the furthest thing from your mind. Your struggles, up to that point, were the most difficult things for you. And now that you’re climbing a different mountain, we sometimes don’t want to extend the same grace to the people who were in the same spot as us. So before I judge, maybe I need to stop and empathize with that person and realize that while our experiences aren’t exactly the same, I shouldn’t invalidate their stress over their struggles. Rather, I need to recognize that I’ve been there, too, and I should seek to understand. I need to do better about saying things like, “Wow, that sounds really difficult and it’s scary when are kids go through tough times, right?” Give it a try and see how that feels; I know I will. The life we lead is challenging, there’s no doubt about it. But it’s also not a contest. When you’re stressed, scared, tired and at the end of your rope, don’t lash out at people, even though it may temporarily feel good to do so. Rather, practice some empathy and work towards building a community of people who care for each other, no matter what you’re going through.

Conquering CHD

30 Days of a Grieving Mother

Losing a child is a trial like no other. There is no one set way to grieve. There is no one way to carry on. In this special post, Heather Speakman, shares part of her family’s journey after the loss of her daughter, Madison. If you’re here for sunshine and rainbows, I hate to break it to you, but you’re in the wrong place. I’ve always felt compelled to be completely honest about Madison’s journey — the good, the bad, the ugly — so naturally this will be no different. I’ve heard people talk about the “fog” that comes with losing a child. What they don’t tell you is that the fog comes and goes, or at least in my experience anyway. Sometimes, I feel like I need to be pulled back to earth. Erik and I were driving back to the Ronald McDonald House after we said goodbye to Madison, and we cried the whole way there. I remember being in a state of total shock, denial and panic all at once. I couldn’t believe my baby was gone; she’s not coming back and my mind was running a million miles a minute. I started thinking of all the things I would never get to see her do…milestones that I was robbed of. I’ll never get to use those baby clothes and blankets everyone sent. I’ll never hear her brother and sisters yell her name. I’ll never get to see her grow up. I’ll never see Erik walk her down the aisle. I will forever have an emptiness that only she could fill. It was so surreal. I was having an out of body experience — there was no way this could be my life. I didn’t want to accept it. The first 48 hours were hard. My in-laws brought Gage and Hayden up, and I was in for a rude awakening. I didn’t realize how long it had been since I had to function outside of the hospital, let alone be a mother to three kids again. We went to the Cheesecake Factory and it was so loud. There were people all over the place. It was weird! For six weeks straight, I would sit in her quiet hospital room, with little to no noise. Sure we would laugh, but you don’t realize how quiet it is until you’re out there trying to function on a Saturday night. We had to wait to get a table, so we spent some time walking around in the mall. I went to Children’s Place to get Hayden a dress for Madison’s funeral and I completely broke down in the baby section. I couldn’t look at the tiny socks and cute outfits. Then Hayden helped me snap out of it, because she was walking around like she owned the place, grabbing everything in sight saying, “ I need it mom! ” (Oy vay this girl!) I also didn’t realize how much time I spent by myself. I couldn’t tell you how many times I walked off by myself, leaving Erik to wrangle the kids. I would quickly realize and say, “Oh sorry babe, I’m coming!” I was trying so hard to be “normal” Heather, and I realized that nothing about this is normal. So I said to myself, “You act how you want to act, and feel what you want to feel. The people who love you will understand and be there for you, whatever that may look like, they will be there. Anyone else that doesn’t like it can go fly a kite.”(That’s the PG-13 version). I’m fortunate enough to have a whole gaggle of people who get me, and that is not an easy task. Sometimes all I have to say is that I’m having a “Madi day” and they understand. (Shout out to the people who would let me snap and not hold it against me, y’all are the real MVPs.) There are days when I feel like my heart is going to explode, and I cry until I can’t catch my breath. There are days when I miss her so much I want to scream. Sometimes, I don’t want to function; but I do it for my living children, even though I feel like I’m failing them the most. There have been times where I see someone with their judgy eyes and think to myself, “Say something, please ! I would love to give you a piece of my mind, let you know that you have no idea what I’m going through. I’d love to tell you that I may look like a “normal” person, but it’s taking everything I have to not fall into a puddle on the floor.” There are days I want to tell the world about my amazing daughter, shout it from the rooftops that she was a fighter, that she made people believe that anything is possible. I want a shirt that says, “I have a daughter, she had a heart defect, she was only 6-weeks-old, I miss her.” Maybe then I would have a reason to bring her up in every conversation I have…you know I’m desperate when I tell bill collectors about her. There are also days where I feel like people don’t have the privilege of knowing about her, if that makes any sense. It really depends on my mood and if I think they can take it or not. For example, I’ve been apartment hunting, and the question, “what brings you to Colorado?” always comes up. If you’re being a jerk, I tell you that my husband got a better job here. If you’re super sweet and I don’t think you’ll cry harder than me, I’ll tell you that I had a heart warrior and she’s not with us anymore. It’s one of my weird “things” I guess. In the midst of the really ugly, hard days I also see a different beauty I never would have known. A friend of mine told me that I would love harder and more, man was she right. I loved kids before Madi, but I often find myself staring at kids and how cute they are (hopefully their parents don’t think I’m being weird.) I want to squeeze all the babies, I mean every single one! I see my friends with their little ones and know that Madi is looking over them. I’ll forever spend my life on a different level, with a piece of my heart in heaven. I have a bigger level of empathy, and I thought I was pretty empathetic before. I see a waitress struggling to remember an order so I give her a bigger tip, and write a note on our check to tell her about Madi. It’s my way of telling people about her without saying too much. We went to eat one day and I paid for a meal for two guys. I told them about Madi and said it was from her. They hugged me, and said they would be praying for us. Having our other children around make everything better. I don’t think I would take a shower some days if it weren’t for them. Tristyn is a typical teenager, doesn’t say much but will give me a look and I know that she’s missing her. My heart breaks for Gage the most; my sweet, innocent little boy doesn’t understand that sister isn’t coming home. The day he came up from Albuquerque, he mentioned buying a present for Madison. Erik and I lost it. We explained to him that Madison wasn’t coming home and that she went to heaven with everyone else we loved. He ran away, cried and hid underneath the covers. I knew exactly how he felt. Before Christmas we would go to the store and he would ask to buy her a present, oh man that wrecked me. He asked Erik one day if we were still going to have a Christmas…talk about gut-wrenching. Hayden is 2, so she doesn’t really understand any of it. We talk about Madison and she uses her blanket, always making sure I know that it’s “Madsun’s bankey,” not hers. Erik and I are irrevocably changed, as husband and wife, as mother and father and as individuals. We’ve been together almost half our lives, and I think it’s fair to say that we’ve been through it. Erik often jokes that our life could be a sad country song, hell at this point it’s a whole album. I thought that we were done with storms, but the truth is you’re never really done. There’s always going to be storms, it’s called life. All I care about is having a man by my side who isn’t afraid of weathering the storm with me, every single one. Erik is everything I need and more. I am so blessed to have someone to share my grief with, and we will get through this together, like we always do. There are times when I look up at the sky, smile and say, “I see you baby girl.” I know she’s everywhere, watching out for us. I miss her so much my chest physically hurts. I find a small comfort knowing that she has a whole bunch of people loving on her in heaven, but sometimes it isn’t enough. Sometimes even though you made the right choice it still isn’t enough. Even if you knew during pregnancy this was always going to be the end game it doesn’t make it easier. All I can say is, “I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.” Heather has been married to her high school sweetheart for 13 years. They have four kids Tristyn, Gage, Hayden, and Madison is their heart baby, who passed away at 41 days old. Since Madi died in November of 2017, Heather has dedicated her life to contributing to causes that helps families like hers, including PCHA, and sharing Madi’s story any chance she gets.

Conquering CHD

A Thank You Note to Our Son's CICU Nurse

We raced through the CICU doors, but I stopped short as we entered the room I was told contained Nicholas. It was just an hour earlier when I kissed my son goodbye; he was placed in an isolette for helicopter transport to another hospital to save his life. Just two days earlier, I had been snuggling, nursing and talking to my seemingly healthy newborn. This is how I knew motherhood to be. And in the blink of an eye a heart defect was discovered, and he was suddenly critically ill. Walking into an unfamiliar room a hundred miles from home, I didn’t see my baby. What I saw was a myriad of tubes running from foreign machines to a motionless body, suspended on a platform, highlighted by an overhead warming lamp. I didn’t hear my baby. Instead, I heard a cacophony of pumps and beeps contributing to the artificial environment. When I saw nothing but a surreal science experiment, you saw my son. You saw hope and potential. So, you loved him, talked to him, sang to him…and then you taught me to do the same. You taught me how to talk to him as if he could hear me. You taught me how to caress his forehead and hold his hand. You shared your hope with me, and taught me to do the same. You were the mother he needed at that moment; the mother I never imagined I would have to be. You taught me how to be this new kind of mother, too. Thank you from the bottom of my heart.

Conquering CHD

5 Things You Should Never Say to a Heart Dad

PCHA strives to empower whole families dealing with congenital heart disease. That includes dads. Thanks, Chris, for the great reminder! Dads, we’ve got your back and we’re always striving to be more intentional about including the heart dad perspective in our content. 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:   That, and another diaper ad where they tested a diaper’s strength by “leaving kids with dad” really started to change things. The portrayal of dads is shifting now from more Homer Simpson to dedicated, loving parent. I’m all about poking fun at myself – heck, you might have seen it on my blog countless times…but I also refuse to be labeled as incompetent.  When you throw a complex congenital heart defect (CHD) into the mix the result is a new normal. Here’s a few things you (both guys and ladies) should never 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. 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 journey. 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 center fielder of the future. Woe is me. 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 three kids a bath, did a load of laundry, washed a sink of dishes, fed two picky kids and tube fed another, swept the floor, 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, so a little kindness toward 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 humorous, and written in a way that I could relate to. 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?” Chris lives just outside Charlotte, NC with his wife and three 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 hlhsdad.com.

Community Voices
Conquering CHD

Why I Can't Celebrate Surgery Anniversaries as an Adult With CHD

By Jennifer Weiner As I ready for my next open heart surgery, I keep finding myself thinking about anniversaries. Not the kind of anniversary you’re thinking, but the markers of an era, like the bombing of Pearl Harbor or the fall of the Berlin Wall. Those moments, as terrible or as wonderful as they may be, leave an indelible line, beyond which life can never be the same. In that context, I can understand the idea of noting the anniversary of a traumatic life event. It’s a pause to acknowledge a great change, a mark left on a life. However, I can no longer reason aggrandizing that event in my own life, celebrating it as if it stands on its own, as a beginning or end. From the moment I was born, I was different, sicker than expected, struggling to keep on weight, and bald. It was then my journey began. Even as a young child I knew my own story: born with a heart defect and surgery at 18 months old. I knew all the urban legends surrounding my birth, my hospital stay, the complications afterwards. To me it was a story of our family’s resilience, one of survival, and one that left the naive impression that there was higher purpose for my life. It wasn’t until high school that I had my second surgery. And still afterward, I labored under the misconception of being fixed. That surgery became the climax of my story, now I was on the the other side. And to mark the event, my best friend deemed September 20, 1999 my “Heart Birthday.” I was finally all human again. Pig valve and conduit replaced with a homograft and a nicely healing line of a scar. The war was over. My new life could start. The next several September 20ths filled with balloons on my car, my favorite cookies, or a girls night out. It was nice that someone else acknowledged the significance the day held for me. But as the years passed, new symptoms emerged — strange palpitations, a racing or pounding heartbeat, lightheadedness. At first, I thought they were anomalies. During their brief appearances, not wanting to cause a fuss, I would take deep, calming breaths and pray for it to stop. And it would. Months or weeks would go by with no sign of them, proof that it was nothing. Finally, I mentioned these fun little episodes to my cardiologist. He didn’t see them as the flukes I had, but as the onset of complications that many CHD patients face. I had a stress test and was put on beta blockers for a developing arrhythmia. This whole concept came as a surprise, I felt even a little betrayed. I was never warned anything else would go wrong. I was never told there would be long term complications. Since then, since 2012, I have seen many new doctors, endured many tests, procedures, caths. I’ve had a pacemaker implanted, then swapped for an ICD. Then spent at least two years describing over and over again, to my team of specialists, the recurrence of chest pain, fatigue, shortness of breath, dizziness, only to be met with a multitude of more tests and zero answers. Earlier this month, I had a routine follow up scheduled with my regular ACHD doctor. Unbeknownst to me, I would actually see the new physician in the practice. The explanation I was given was that the team wanted both ACHD docs to be familiar with all the patients, in the event only one was available at a given time. A fresh set of eyes, a few recent tests, and a new CT scan brought an evaluation two years in the making. I had a leaky valve and an aneurysm in my pulmonary conduit, making for a higher than idea pressure in my pulmonary artery/right ventricle/lungs. After being told a mere nine months ago that surgery wouldn’t be necessary “anytime soon,” I am now looking at an imminent operation. The news was scary, yet also a relief. I am not crazy. My symptoms are not in my head. But the thought of facing such a complicated procedure rattled me. I had gone nearly 20 years since my last major surgery. I thought I was stable. I thought I was in the black. But that’s the thing about CHD, isn’t it? It’s always changing, it’s unpredictable. It is never fixed. These last two decades taught me that surgery is not a fresh start. It’s not the end of a life filled with illness. It’s merely another plot point on the chart of my life, a battle in the war to conquer CHD. While I will always feel the twinge of bittersweet memories each September 20th, I cannot celebrate the date, or any “Heart Birthday” to come, as a benchmark for my recovery, for, today and forever beyond, the fight goes on. Jennifer Weiner is a 36-year-old with truncus arteriosus. She is the Lead ACHD Volunteer for the Pediatric Congenital Heart Association.

Tessa Koller

What It's Like Not Knowing If Your Symptoms Are an Emergency

It’s safe to say, I’ve had my share of struggles and within the last few weeks. I’ve endured a lot. A trip to the emergency room a week ago made me realize how difficult it is to have heart and lung disease. Chest pains emerge, and I have a hard time telling if the pain is heart or lung. Every pain and sharp or shooting stab in the chest can feel like it’s on the surface or very deep. Doctors need to tell patients will both diseases what to assess when struggling with chest pains. Almost every day, I have heart attack symptoms. Last week, I was having persistent chest pains accompanied by several other symptoms that signaled a heart attack. This drove me to the emergency room. The scariest part of having both lung and heart disease is not being able to decipher what type of pain I am dealing with. There’s angina, indigestion, and chest pains that might be warning signs of a heart attack, but it’s difficult to distinguish what is occurring. Sometimes I want to say, “Ah, chest pains. I’ll let this take its course and do nothing.” I’ll kick my feet up and assume the problem will solve itself. A trip to the ER means the problem didn’t resolve itself. The pain continued and worsened, triggering other symptoms. I always ask my doctors what I should look out for regarding distinguishing these pains, and I am always told they don’t know what to do for me. I go to the emergency room, and tests come back normal. However, with this ER trip, I learned that my blood pressure had been rapidly dropping with aggravating heart palpitations that feel close to a heart attack. As I tried to rule out the cause of this, I kept thinking that I was in emotional distress or that anxiety had been taking its toll on me. Anxiety doesn’t cause severe drops in blood pressure last I checked, but maybe it does. Doctors need to stop telling patients, “You’re just stressed. Take time off.” A doctor said this to me when, actually, for the last six months, I’d been having heart issues again when I wasn’t stressed or in emotional distress. Doctors are quick to label your pain as anything to ease your mind about the symptoms. The last time that occurred, I found myself almost having my second open heart surgery. So no, I don’t accept it when I hear, “You’re just stressed.” Believe me, if I am getting that stressed, I wouldn’t be doing the work I am doing today. I can’t afford stress. Do I have anxiety? Yes, but I manage it. When pain comes on, and I can’t distinguish if it is heart or lung, that alone causes anxiety. So, should I rush to the emergency room every time I feel pain or a pinch in my chest? I will not live my life on a panic switch, pushing some button every time I feel discomfort or shortness of breath. I do my best to eat right and exercise. When the pains come on, I have to lie down and assess if I am in an emergency situation or not. There is a reason why I say it’s important to listen to your body. If you don’t know what your pain is telling you, it’s OK. Just don’t just wait it out and hope it’s nothing. Remember, if you’re uncertain, don’t be scared to ask for help.

Conquering CHD

A Dad of a Child With CHD Offers Advice to Other Dads

I am the dad of two kids, one with a complex congenital heart defect (CHD) and one with minor CHD combined with a rare airway disease. The kids like to say our family is two in 100, since every one in 100 babies are born with CHD. Dads generally have two goals when it comes to their family: happiness and health. Heart dads are certainly in that group, but the process of obtaining and maintaining that second goal can be much more complicated. CHD is your own, often unfair and definitely unwanted, version of normal. You live by the calendar, whether it is doctor appointments, medication dosing, or interventions and surgeries. I like to say heart dads are regular dads with a lot more to remember. The voices of heart dads are sort of quiet in the CHD community. If you’re anything like me, you’re an introvert who pays attention to data and isn’t so great with support groups or big picture ideas. I want to be just as involved and just as knowledgeable as the next heart parent, but how do I do that in the world of Facebook groups and blogs? It only took my wife and I eight years on the CHD rollercoaster to come up with a plan, a split of duties so to speak. We are both involved in ways that work to our strengths and preferences. Our sons see both of us doing work in the CHD sphere and we always come together as a family for local CHD activities. Here are a few of the things I have found helpful along my heart dad journey, helping my kids to be happy and healthy, and somehow finding myself happy and healthy too: 1. Teach a new skill, game or trick. Teaching your kids new things is fun and exciting for them, but it also helps promote a strong bond and connection with you, which is far more important than the rules of any game. I still remember when each of my boys could dribble a basketball, hold scissors the correct way, and especially when they learned to swim. And we are working on shuffling a deck of cards now, along with reading Harry Potter. 2. Compare scars. It’s important for your child to know their scars don’t define who they are or who they will become, but it can also be something they have pride in. Show off any scars you may have so they can see how their own scars might change over time. When I was 12, I crashed my dirt bike and ended up with an emergency splenectomy and a scar the full length of my abdomen. This provided a great connection with my son after his first surgery and throughout his preschool-aged years. 3. Promote connections. Promote a connection to any other family members who have heart disease, even if it is long-distance. Find other heart kids, teens or young adults so they have role models for different stages of their lives. Even though we know our kids are one in 100, at times they can surely feel like they are the only ones going through this. My father-in-law had open-heart surgery shortly after my youngest son’s Glenn surgery. It was very touching when he removed his shirt so that he could compare his scar to my son’s over video chat. Even though their grandparents live across the country, they are bonded through their hearts with Pops and through gardening with Mimi. 4. Manage medications. Know your child’s medications and dosing schedules inside out, backwards and on little to no sleep. Anytime there are changes to the medication schedule, be it sickness or higher doses as they grow, I build an Excel spreadsheet with the new dosing schedule. It gets printed and taped to the kitchen counter so that I can mark off doses when given. My spreadsheet was super handy during the weeks following my son’s Fontan surgery when meds are given around the clock. Sure there are apps for this, but doing the spreadsheet was my way of being involved and connected. 5. Attend medical appointments. Attend every appointment you can, no matter how routine it is or how quickly it goes. Each interaction with your child’s clinicians is an opportunity to advance your knowledge on how to best care for you child. I think we all worry about our CHD kids growing up and taking over their own care. Start young and show them what staying in care looks like, which means us dads need to go to our own doctors, too! 6. Use your strengths. I am an analytical computer nerd with a passion for physics, so I built the medication dosing spreadsheets and dove into the world of cardiology, until I learned everything that I could about my kids’ specific anatomy. Everyone is talented or passionate about something. The real trick is figuring out how to channel that energy into something that helps your family or the broader CHD community. 7. Have a strong partnership. This is probably one of the most important things heart dads can do. The CHD journey is no joke, and having a solid relationship with your spouse, co-parent or significant other is crucial. Divorce rates among parents with medically-needy children are super high for many reasons, not the least is the incredible amount of stress. Whoever said that building a house together was a true test of a marriage never had kids with CHD. Talk to your partner, listen to your partner, go to counseling separately or together if needed. You are a team. Find other CHD dads; I have met a few other heart dads along this journey, from fatherhood veterans to fatherhood freshmen. There is a common bond between us because of CHD and no other dad has ever understood the gravity of seeing my son’s pink fingers and toes for the first time after Fontan surgery. Sometimes we don’t even talk about CHD or our kids but being together with those who truly get it is validating. 8. Take care of yourself. Let’s face it, the CHD journey is a marathon that never really ends. If you don’t stop and decompress once in a while you are going to burn out. Find a hobby. Exercise. See your doctor every year for a physical and actually tell them how you are doing (I am still working at this). Please, take it from my years of doing so, don’t compartmentalize everything until you explode. 9. Get involved with the CHD community. There are a lot of options once you are ready to take this step. Does your state have a PCHA chapter? Do other CHD organizations have a presence in your community? Do you have a skill you can lend to the broader CHD community? Will you send emails or make phone calls to your legislators, asking them to support key CHD measures? Can you visit Washington DC in February for lobby day? Do you want to just go bowling with other heart dads? Do it! Heart dad is a designation that I doubt any of us asked for, but it is a badge we proudly wear. It says we are fighting the CHD battle right alongside our kids, doing whatever it takes to keep them happy and healthy. Be proud of the work you are doing in your family. Tell people you are a heart dad, advanced “dadding” required.

Conquering CHD

To My Wife, This Coming Mother's Day

I remember when you first found out you were going to be a mother. The disbelief and overwhelming excitement of bubbling intensity. Unsure of what true emotion to feel, we embraced one another and leaned on our unconditional love and faith to guide us through. It’s ironic that these same pillars of our relationship are what we would need to rest on heavily sooner than later. Unfortunately, we weren’t able to bask in the joys of pregnancy for long because we were given a different journey. Your path has never truly been the typical path and you have never been a typical mother. You are far beyond the typical in all you do, and motherhood is no exception. You are always perceptive and aware, constantly observing and analyzing, but even with those admirable qualities, nobody could predict your true calling. I vividly remember when you first found out our baby would be born with a congenital heart defect (CHD). I remember the anxiety of the ultrasound. I remember the tremble in your hand. I remember the tears in your eyes. The car ride home, the vulnerability and the confusion of how this could be our story all resonate deeply in my soul. I mention these moments because they are the last days I remember of the woman I met and married. From that point on, you evolved into the new and improved version of that woman and I am still amazed at that transformation daily. Since that moment, until long after you read this, you have been a fierce advocate and a perfect example of a nurturing and invested mother. “Inspiring” doesn’t begin to encapsulate the way you attacked this diagnosis and all of the pertinent information that comes along with it. You immersed yourself in the CHD community learning as much as you could about Avery’s condition, its pitfalls and how we were going to mitigate its effects as best we could. None of this was easy as we stared in the face of the “what ifs” that lurked in our minds. The uncertainty of it all can leave you searching for more and more information, which once obtained, doesn’t necessarily subside the fear and anxiety of the imminent future. I mention all of this because I want you to know that I see you. I see you hurdling these obstacles as they are thrown at you with intent and grace. I see you losing sleep and how it chips away but still finding the energy to flash a refreshing smile and hearty laugh. I see you trying to be the best mother, wife, therapist, cardiologist, activist, pre-school teacher and many more things that you can be. I see you trying to remain perfect in an imperfect world and it inspires me. I see how hard you push yourself, but more importantly, I understand why. I see you reaching out to help other heart families, recognizing that we are part of a larger community of heart parents. I see this and so much more when I look at you. You are the perfect mother for the perfect little girl and I am truly the lucky one. The other day I mentioned to you how I really thought you were an outstanding mother and you looked back at me with disbelief. Let me assure you there should never be a single doubt in your mind on whether or not you are a great mother. Your love, compassion, attentiveness, patience and drive are unquestionably why our family enjoys so much happiness. I want you to know you should always be confident of how well you are doing everything. You deserve every blessing you receive and all those that are still to come. I wish you calm and peace on this, your third Heart Mother’s Day. May the serenity you deserve be all that you need it to be. I will always see you because I can’t take my eyes off of you. Love, Brett