A Letter To My Son

PCHA wishes all dads a Happy Father’s Day! We’re happy to share this letter written by Nolan Chenevert, who celebrates his second year as a dad to his son Barrett “Bear”.

Dear Barrett,

I remember so vividly how excited I was when your mom first told me that I was going to be a dad. I also remember how excitedly terrified I was the first time I held you. You were now something that I had to take care of, care for, and teach (thankfully, Mom is here to help!). I was officially a dad, your dad! My heart was so full and my mind was racing with all of the possibilities that your future held.

After a very moving and exhausting day (especially for mom!), things turned around quickly. You turned blue, were having trouble breathing, and they wanted to transfer you to another hospital. It was like I had just been repeatedly punched in the gut. I ran the three blocks to where they had taken you. I stopped in the hallway outside your room and froze. You were right there, but I couldn’t go in or talk to you, I couldn’t do anything for you. I’ve never felt such an incredible feeling of being so powerless. A team of nurses and doctors had your incubator surrounded and when I was finally able to see you, I noticed all of the tubes, wires, and tape that now covered your body. I just sat there in that hallway, trying to convince myself that this wasn’t real, that you were going to be just fine, that your mom and I were going to be taking you home soon. Your plane had finally arrived and it was time for you to get on it, without me.

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Two major heart surgeries, multiple procedures, and dozens of doctor appointments later, you’re here doing exactly what I imagined you would be doing. Your first day of life gave me such a wide range of emotions that it might seem like the days since would be boring, but every day is its own wild ride. I get significantly less sleep than I ever imagined I would have, but I can’t wait for my first hug in the morning. I shake my head when you get into one thing after another, but I love the smile you get when you’re having so much fun. I get to pick up toy cars and dinosaurs just to get them thrown right back out again, but you are learning to help. All of the trade offs are worth it, because you are here.

Today, I feel the greatest pride when I get to show you off and brag about how great you are doing. Being a parent is a feeling that is unparalleled by anything else I’ve ever experienced.

Throughout my life, I have always looked forward to celebrating Father’s Day with my dad.  We would always get together with your Grandpa and spend the day trying to do things we thought he wanted to do to celebrate him. I have nothing but happy memories of Father’s Day, both as a son and grandson, but now as a dad. Last year was my first Father’s Day with you and I’ve determined that it isn’t just about being celebrated by others for being a dad. It is just another day to celebrate the fact that I get to be your dad.

I couldn’t be prouder to be your dad. I love you!

Dad


12004727_10106681235387660_8976356233192569832_nNolan lives in Duluth, Minnesota with his wife Jess (Volunteer Social Media Coordinator for PCHA), their son Barrett “Bear” and their dog Bailey. Barrett was born with Transposition of the Great Arteries & Coarctation of the Aorta. Nolan is an elementary school teacher currently teaching 4th Grade. Nolan enjoys baseball, golf, playing guitar, kayaking, and spending time with his family.

A Father’s Loss, and Life After

As Father’s Day approaches, PCHA would like to acknowledge fathers, and all parents, who have lost a child. We are privileged to have Trey Flynn share his story on loss and life after. 

We’ll never forget our child’s last breath.  No matter how hard we try and create a new and happy ending in our dreams, the pain is still fresh on a wound that will never heal.  On January 5, 2014, Holden Joseph Flynn lost his battle with CHD while awaiting a heart transplant.  His last breath ending 2 years, 2 months and 26 days after his first.

We learned of Holden’s diagnosis at his 20 week ultrasound, and spent the next 18 weeks mentally preparing for the plethora of testing and intervention that the medical professionals assured us would exist. By Holden’s 14th month, he had already undergone four operations to repair a distressed, broken and inevitably failing heart.

I am his father, his protector, yet so many of my days left me feeling as if I was powerless.  Nicole and I went through every procedure hoping and praying that this one would be the one that fixed everything. It didn’t matter that we knew that those sort of results weren’t possible, it was the principle. We were there for every hospital stay, every needle, and every drug. We felt every scream, every cry, and every tear. Eighteen hour days in the hospital gave us more than enough time to try and push the positives. That’s all we had.

In a split second, CHD took two very positive and upbeat people and destroyed every bit of being we had. The days, months, years (and it’s sad to say, that word…years) have been just as difficult. Not an hour goes by where we don’t think about Holden. What he was. What he would have been.

Nicole and I had always wanted numerous children. The exact number was always up for debate, but numerous is a great term to adequately describe it. Numbers aside, we’d dated since 1999, and after years together, the plan was in place. Holden was the first.

Then 2014. We weren’t sure we could do it again. Discussions led to anxiety, and even when I found myself trying to play the tough guy, deep down I was just as anxious as Nicole. What if? What if our next child also has CHD? What if we have to spend our days drawing medications? What if we’re making frequent and uncertain runs to the hospital?  Could we do it again?

Questions loomed larger than answers. Maybe that’s because we didn’t want to have to put a child through that, and somewhat selfishly, ourselves too.

In our own ways, we loved being parents, and we wanted to cover those question marks in our minds. We met with doctors. We read stories. We talked to other families. Deep down we knew were working our way to having another child. CHD already took Holden, we couldn’t like it take those plans from us too.

I want to be that dad who gets to take his kid to his or her first ballgame. Teach his kids how to respond to that inevitable injury that comes from DIY type housework. That dad who is googling advanced mathematical theory to help their kids stumble through their homework. I just want to continue being some sort of pseudo-Super Dad, as nerdy as that might sound. I miss it.

On October 11, 2015, we found out Nicole was pregnant with our second child. Oddly enough, that would have been Holden’s fourth birthday. It was only a few days before that she tested negative. We were ready to continue our journey.

So, what about his heart? Months went by with those concerns. Even with modern medicine and ultra-sound-y scans you can’t tell when he’s the size of a grape. In February, we had that granddaddy of all heart scans with the very same doctor who relayed the jaw dropping news of Holden’s condition at that ultrasound in 2011.

“Everything is good.”

I couldn’t help but jump up and give him a giant hug, as my wife emphatically caught the moment on her camera. We know that those results aren’t 100%, but they’re pretty close, and besides…I unfortunately know four chambers and two valves when I see it on an echo.

So, back to being parents.

Before Holden we were two young adults, who enjoyed going to concerts, or sporting events, or dinner without having to plan. Like any child, Holden changed that. Happy hours turned into dinner time, baths, and Goodnight Moon. The weekends, once filled with trips to the beach were now spent pushing a stroller around the lake or stacking Duplo blocks. We loved every minute of it, as it was just such an awesome experience.

In Holden’s passing, we unwillingly were placed back in that original lifestyle and we didn’t want to be there. We wanted a few interrupted nights to go with the dirty diapers and canned beets.

So when it finally came time, when we finally said we’re ready, those CHD issues dropped back. Could it happen? Sure. It’s a disease that has very little answers. We don’t know why Holden was born with a broken heart, but we did know two things. I love being a father…and between Nicole and I, we are darn good at the whole parent thing. CHD be darned, we were ready.


trey-flynn (1)Trey Flynn is an attorney in Orlando, Florida. He, his wife, family and friends created Yellow Brick Road: The Holden Flynn Foundation in July of 2014. The Foundation focuses on Congenital Heart Disease and deluxe hospital friends wagons.

Making the (Heart) World a Better Place

PCHA is pleased to welcome back recurring guest writer Chris Perez for our Fathers Blog series.

Let’s get one thing out of the way: the day you looked at the grainy ultrasound image as your wife’s doctor started his or her sentence with “unfortunately” or the moment you realized your newborn would be whisked away via ambulance or helicopter, fatherhood became way different. You realized that the formative years of your child’s life would possibly be spent in doctor’s offices vs. on a football field or an ICU floor vs. a basketball hardwood floor. You suddenly found yourself more tired than you’ve ever been, more broke than you’ve ever been, and more scared than you’ve ever been. Being a dad is hard work, and if you’re like me, some days you feel like maybe you’ve got a bit of a grip on this whole things, while other days you feel like the Washington Generals and life is just waiting to douse you with a bucket of water. So how do you know you’re doing things right? Last year I stumbled upon this fantastic quote by Ralph Waldo Emerson, who wrote the following about success:

To laugh often and much;

To win the respect of intelligent people and the affection of children;

To earn the appreciation of honest critics and endure the betrayal of false friends;

To appreciate beauty, to find the best in others;

To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition;

To know even one life has breathed easier because you have lived;

This is to have succeeded.

I actually have this quote cut out and taped on my bathroom mirror, and I feel like it’s super powerful, especially for a Heart Dad. You see, for us this quote seems a little weird. Laugh? You gotta be kidding me, right? I promise you guys, there are moments of laughter in there … it might take awhile, but it will come.

Maybe you’re not the smartest, but I guarantee you that Heart Dads work the hardest. And it doesn’t take a wall full of degrees to accomplish that. And sure, our kids may not be considered physically healthy, but we can make sure we raise heart warriors who are kind, empathetic, and want to make the world a better place. I think that is what Emerson was talking about there.

To know even one life has breathed easier because I have lived. That’s a big responsibility, but that’s why you share your story, that’s why you advocate for CHD research. That’s why I write my blog. Listen, there are days I don’t feel like doing it. I’d rather sit on the couch and eat a whole carrot cake, but people continue to contact me letting me know how much I’ve helped. And that is what keeps me from quitting. Dads, there are people out there waiting to hear your story … they need to hear your story.  Share it!

The journey of a heart family is full of ups and downs, cheers and tears, joys and sorrows. It would be so unfair to use traditional measures of “success” for a Heart Dad. For me, Emerson’s words are what I hope to achieve. I hope that it works for you too. Because when it’s all said and done, if I never get another raise, if I never make more money, if I never have the nicest car, it will all be OK as long as I’m a great dad who did all he could for his family and others. That’s how I want to be remembered.

So Heart Dads, when you’re giving yet another late night tube feed, or you’re trying to get comfy on that wonky recliner in your child’s ICU room, or you’re flexing off work to go to yet another doctor’s appointment, I want you to do a few things. First, take a few deep breaths. Next, think about the smiles and laughs, think about the awesome kid you’re raising, and think about what you’re doing (or can do) to make the world a better place for Heart Kids and Heart Dads. And my hope for you is that – in that moment – you’re reminded of your impact and your strength. Keep it up, Dads! And have a Happy Father’s Day this month!

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Blogger_Perez_ChrisChris 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.

Update: Save vital CHD research funding!

Advocacy Works:

Senator Durbin’s Amendment to support research not red tape passed yesterday afternoon with a bi-partisan win of 66-32. A huge thank you to all of you who have called, tweeted and shared your stories.  National advocacy efforts were mentioned multiple times during the debates, including a letter that PCHA joined with 142 other advocacy organizations.  During the debate process, excellent points were raised about research funding.  We are looking forward to understanding more about how national research for the most common birth defect will continue to be supported!

Please consider thanking your member of Congress who supported the amendment.  Here is how the played out:

YEAs —66 NAYs —32 Not Voting – 2
Alexander (R-TN) Barrasso (R-WY) Sanders (I-VT)
Ayotte (R-NH) Coats (R-IN) Warner (D-VA)
Baldwin (D-WI) Corker (R-TN)
Bennet (D-CO) Cornyn (R-TX)
Blumenthal (D-CT) Cotton (R-AR)
Blunt (R-MO) Crapo (R-ID)
Booker (D-NJ) Cruz (R-TX)
Boozman (R-AR) Daines (R-MT)
Boxer (D-CA) Enzi (R-WY)
Brown (D-OH) Ernst (R-IA)
Burr (R-NC) Fischer (R-NE)
Cantwell (D-WA) Flake (R-AZ)
Capito (R-WV) Graham (R-SC)
Cardin (D-MD) Hatch (R-UT)
Carper (D-DE) Inhofe (R-OK)
Casey (D-PA) Lankford (R-OK)
Cassidy (R-LA) Lee (R-UT)
Cochran (R-MS) McCain (R-AZ)
Collins (R-ME) McConnell (R-KY)
Coons (D-DE) Paul (R-KY)
Donnelly (D-IN) Perdue (R-GA)
Durbin (D-IL) Risch (R-ID)
Feinstein (D-CA) Roberts (R-KS)
Franken (D-MN) Rounds (R-SD)
Gardner (R-CO) Rubio (R-FL)
Gillibrand (D-NY) Sasse (R-NE)
Grassley (R-IA) Scott (R-SC)
Heinrich (D-NM) Sessions (R-AL)
Heitkamp (D-ND) Sullivan (R-AK)
Heller (R-NV) Tillis (R-NC)
Hirono (D-HI) Toomey (R-PA)
Hoeven (R-ND) Vitter (R-LA)
Isakson (R-GA)
Johnson (R-WI)
Kaine (D-VA)
King (I-ME)
Kirk (R-IL)
Klobuchar (D-MN)
Leahy (D-VT)
Manchin (D-WV)
Markey (D-MA)
McCaskill (D-MO)
Menendez (D-NJ)
Merkley (D-OR)
Mikulski (D-MD)
Moran (R-KS)
Murkowski (R-AK)
Murphy (D-CT)
Murray (D-WA)
Nelson (D-FL)
Peters (D-MI)
Portman (R-OH)
Reed (D-RI)
Reid (D-NV)
Schatz (D-HI)
Schumer (D-NY)
Shaheen (D-NH)
Shelby (R-AL)
Stabenow (D-MI)
Tester (D-MT)
Thune (R-SD)
Udall (D-NM)
Warren (D-MA)
Whitehouse (D-RI)
Wicker (R-MS)
Wyden (D-OR)

 

 

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Act Now!

1) Find the Washington D.C. phone numbers for your 2 Senators at www.Senate.gov

2) Give them a call and ask them to “support Senator Durbin’s Amendment #4369 to S.2942, the 2017 National Defense Authorization Act.”

3) If they ask for more information you can add:

  • By eliminating Sections 756 and 898 of the legislation, this amendment will ensure that the critical, cutting-edge CHD research happening at the Department of Defense (DoD) can continue.
  • Congenital heart disease (CHD) is the most common birth defect and leading cause of related infant mortality. Even those who receive successful intervention are not cured.  Children and adults with CHD face ongoing, costly, specialized care, and face a lifelong risk of permanent disability and premature death.
  • The DoD medical research related to CHD directly impacts the health and lives of the U.S. military, veterans and their families.
  • For examples of the impact on CHD look here: http://conqueringchd.org/calling-congress-support-research-not-red-tape/
  • We must not let our Federal commitment to research falter.

If you are on Facebook, please consider sharing this message:

For more than twenty years, the Department of Defense’s medical research program has achieved medical research breakthroughs for service members, military families, and veterans. It is one of the largest sources for congenital heart disease (CHD) research. Some in Congress are attempting to strangle this program in red tape. Two provisions inserted into this year’s National Defense Authorization Act would effectively halt this progress and jeopardize the health of military families and veterans. I’m proud to join Senator Durbin and Senators from across the country to remove these provisions so that this life-saving research can continue. http://conqueringchd.org/calling-congress-support-research-not-red-tape/

(Don’t forget to tag your Senators)

If you are on Twitter, please share one of the following tweets:

  • I’m proud to join @SenatorDurbin in supporting life-saving research for service members & vets #ResearchNotRedTape http://bit.ly/1r5M1do
  • I support the #ResearchNotRedTape amendment to fund breakthrough medical research for service members & veterans: http://bit.ly/1UmgbjM
  • .@ [Your Senator’s Handle], please join me in supporting @SenatorDurbin’s #ResearchNotRedTape amendment to fund @DeptofDefense medical research

If you decide to take action, don’t forget to let us know!
Simply send us an email, or complete the I did it! from on our website!

Thank you for your advocating – together we are Conquering CHD!!

A Story and a Scar

Throughout June the Pediatric Congenital Heart Association is honoring Fathers by covering relatable topics through our guest blog posts. To kick off this month, we’re honored to have writer Rob Hart share his story.

Thirty minutes after my wife and I walked through the front door of Richmond University Medical Center, our daughter Abigail Joule was born. No anesthesia, ten minutes of pushing. Nurses were stopping by to meet Amanda. She was like a folk hero. This was on January 18, 2015. Two days later, the morning we were to be discharged, our pediatrician marched into the room and announced he heard a heart murmur, and even though it was probably nothing, we needed to see a cardiologist. We set a land speed record for hospital discharge. Amanda was signing a form with her right hand while she was getting a TDAP vaccination in her left arm.

“Bohemian Rhapsody” was playing in the car and I took that as a good sign. Twenty minutes later we were in the cardiologist’s office. He repeated what the pediatrician said. That it was probably nothing. A small hole that might resolve by itself. We put our tiny new baby on the crinkle paper and the doctor pressed the plastic wand to her chest. An hour later we walked through the door of our house and I made it as far as the steps leading to the second floor. I held my daughter tight to my chest and cried. Shaking, couldn’t breathe, coming apart crying.

She was five pounds, two ounces. Barely bigger than my forearm.

Tetralogy of Fallot is a cyanotic heart defect that occurs in about 400 per million live births. Four abnormalities are present. First is a narrowing of the pulmonary valve, which reduces blood flow to the lungs. Second, there’s a hole in the wall that separates the two lower chambers, causing oxygenated and deoxygenated blood to mix. Third is an overriding aorta—a normal aorta branches off the left ventricle. Here, though, the aorta is shifted to the right, so it receives blood from the left and right ventricles. All these things serve, over time, to reduce the amount of oxygen in the blood. Finally, because the heart is pumping harder to keep oxygen levels up, it causes the wall of the right ventricle to thicken. This can cause stiffness and eventually failure.

The cause is unclear, and it can only be repaired with open-heart surgery, usually within the first year of life. It involves widening the pulmonary valve, sealing the hole between the chambers with a patch, and trimming muscle from the right ventricle. The surgery carries a low risk—five percent perioperative mortality. When successfully repaired, it carries little impact on the ability to live a normal life. Shaun White, the Olympic snowboarder, was born with Tetralogy of Fallot, which required three surgeries to repair.

This is what happens when you have a baby with a rare congenital heart defect: You have to decide who to tell. First off is parents, obviously. Then employers and close friends. You don’t put it on Facebook. But you do tell your agent and your publisher. With your first novel coming out in June, and with so many moving parts in the publishing process, you need to let them know things are about to get unpredictable. That’s the e-mail, the one going out to people you don’t know on an intimate level—people you’ve never seen in their pajamas—that the reality gets too heavy, and you need to hold the baby for a bit to calm down.

You worry how this is going to impact the release of your novel—whether you’ll have time for promo of if you’ll have to cancel your launch party—and then you hate yourself for thinking that. You read about Tetralogy of Fallot on the Internet. Then you stop reading about it because you figure it’s better to get information from an actual doctor. That lasts for a few hours, and then you go back to reading about it.

You try and get used to your baby being tinted slightly blue. She’s cyanotic, given the lower level of oxygen in her blood, so she’s never pink the way a baby is supposed to be pink. And it gets worse when she’s cold or crying and can’t catch her breath. You never get used to this.

You don’t sleep, even more than you wouldn’t have. You drink a little more than you would have, then you hate yourself for drinking because what if you need to drive to the hospital?

Every time you go to the doctor, you think they’ll have screwed up somehow—that they read the echocardiogram wrong, or there was some dirt on the stethoscope, and she doesn’t have it, no harm no foul. Every single time.

You spend a lot of time sitting in the nursery with the lights off, letting your daughter nap on your chest. She is so small. So perfect and yet not-perfect.

We met with the surgeon on a wet, cloudy day, at NYU Langone in Manhattan. He sat us down in his nearly-empty office overlooking the East River. He opened a binder full of diagrams of heart defects, the hearts shaded in deep blues and reds. At the Tetralogy of Fallot page, he said, “This is the least scary page in here.”

What he meant was that the surgery had a high success rate, and otherwise there didn’t appear to be any other complications. The surgery would happen when it needed to happen. Sometime within the next few months. It would depend on a number of issues: Abby’s oxygen levels, how well she was putting on weight. The latter was an issue. She had fallen under five pounds by her first official visit with the pediatrician. Every time we brought her in for a check-up, she failed to meet her goal weight. The pediatrician called it “failure to thrive” and it was probably maybe related to her heart condition.

So we fed her, a lot. She puked, a lot. We switched from regular burp clothes to more robust towels. Every time we went in to get her weighed, it was a guessing game. “It’s been this many days and the doctor wants her to put on an ounce a day so she should weigh this much…” She always weighed under that number. Which was a great way to make us feel like we were failing as parents. But in time we got used to the frustration and the constant feeding, to the point where things almost felt normal.

And then, one day in March, we went in for a routine check with the cardiologist—two months out from when they were thinking they’d maybe do the surgery—and her oxygen saturation, which should have been between 95 and 85 percent, was hovering around 70 to 75.

A few hours later, we were in the hospital. When the medical team wheeled her out of the room to take her down for pre-op, she had been sleeping, and my wife asked if we could say good-bye. We took turns kissing her on the forehead, and she woke up and looked at us, and even remembering that is hard. We ate a big diner breakfast across the street from the hospital. We thought about taking a walk but it was too cold so we went to the waiting room. I can’t even remember how we passed the time. It just passed.

Six hours later and we found out that she was too small for the full repair. The surgeon said he could have tried, but it would have increased the risk of complications in the future. So they put in a shunt—a new pathway for blood to travel so her oxygen levels would increase. That would allow her to grow more before they tried again.

We had to come back sometime in the next few months. I knew the surgeon did his best but still I wanted to hit him.

This is what happens when you have a sick baby who’s still sick after one open-heart surgery:

When you want to pick her up, you scoop her up under her butt and upper back, because for six weeks after surgery, her breastbone is healing. Picking her up under the arms could put too much pressure on it and cause it to crack. You have recurring stress dreams about picking her up under the arms and cracking her breastbone. You’re back to not sleeping.

You get a pile of medicines she’ll need to take until her next surgery: Baby aspirin to thin her blood, Enalapril to keep her blood pressure down, Furosemide to prevent fluid retention, Omeprazole for acid reflux. You come up with carefully choreographed feeding schedules so she’s less likely to puke them up.

You get used to explaining Tetralogy of Fallot. Because the day before her surgery you made it “Facebook official.” For as conflicted as you feel about that, at least it’s efficient. And you’re tired of telling everyone things are fine, because things aren’t fine.

You get invited to read at a bookstore in Texas when your novel comes out in June. The next surgery is tentatively scheduled for August, but you can’t commit to travel, because what if it gets moved up? You get frustrated, then hate yourself for being frustrated.

As you get closer to the second surgery, you find yourself with more time to reflect. The first one happened so quick it felt like it was over just as soon as it started. Suddenly you’ve got an elective date that’s weeks off. You know what to expect and you’re not sure if that makes it easier or harder. You look at your schedule—columns to write, deadlines to hit—and you put them aside so you can sit on the play mat with your baby and laugh and clap because she’s figured out how to roll over.

You do this because you know a friend of a friend who died after going in for knee surgery, and you have to accept that these moments with your daughter might be the last time you get to spend with her.

The day we took Abby in for her second surgery in August, we handed her to a lanky German anesthesiologist who kissed her on the cheek, and we didn’t cry for nearly as long as we did the first time. We ate a big diner breakfast across the street from the hospital. We took a long walk crosstown to Barnes & Noble. My book had been out for two months at this point. We found a few copies tucked in the fiction section and my wife re-arranged the shelf so they were facing out.

We went back and sat in the lobby. I tried to read The Things They Carried by Tim O’Brien. I kept having to go back to re-read the parts I glossed over. After six hours, about the time they told us it would take, we were getting antsy. Someone was supposed to come out and get us, bring us into the room, wait for her to arrive. That’s what happened last time. Every few minutes, we checked the clunky phone the nurses had given us.

And then the surgeon appeared, smiling.

Sometimes with this surgery they can’t preserve the heart valve, which necessitates a replacement later in life. They preserved it. Her pulmonary arteries were still a little narrow, and they might grow, or they might require widening at some point in the future. But that can be done with a balloon in a catheterization laboratory. There are no guarantees in life, but the chance of her needing another open-heart surgery is extremely low.

This is what happens after your daughter’s second open-heart surgery, when she gets a clean bill of health: You can make travel plans again. Maybe a book tour when the second novel comes out in February. You can plan things.

You realize this and you cry, again, but it’s not sad crying, and it’s not even happy crying, not really. It’s that last bit of fear and uncertainty and anger getting wrung out. It’s like a torn muscle healing itself, getting stronger. It’s knowing that you’ve reached your emotional limit, that you’ve faced down the worst thing you’ve ever experienced, and you got past it. With the love of your wife and your family and your friends. For this beautiful little girl who is now perfect-perfect, even though she already was in the first place.

Things go back to normal, so that when she’s screaming at you while you’re trying to eat dinner, you just get flustered like any normal parent. But then you take her up to bed and lay her on the changing table and she is so pink. Pink the way a baby is supposed to be pink. You trace the mottled line running down her chest, and touch her lips and fingertips and ears, and the little point of her tongue that she sticks out at you. She is flush and full of possibility.

You realize that this terrible odyssey is now nothing but a story and a scar. And you are thankful in ways you didn’t know were possible.

Rob’s story originally appeared on The Good Men Project


Hart_RobRob Hart is the author of New Yorked and City of Rose. His short fiction has appeared in Thuglit, Joyland, and Helix Literary Magazine. His non-fiction has appeared at Salon, the Daily Beast, and the Powell’s bookstore blog. He lives in New York City with his wife and daughter. You can find him on the web at www.robwhart.com and @robwhart.

Calling on Congress to Support Research, Not Red Tape

Graphic_Twitter_ResearchNotRedTape

The Pediatric Congenital Heart Association is urging Senators to support Illinois Senator Durbin’s Amendment #4369 to S. 2943, the fiscal year 2017 National Defense Authorization Act.  By eliminating Sections 756 and 898 of the legislation, this amendment will ensure that the critical, cutting-edge congenital heart disease research happening at the Department of Defense (DoD) can continue.

Congenital heart disease (CHD) is the most common birth defect and leading cause of related infant mortality. Even those who receive successful intervention are not cured.  Children and adults with CHD face ongoing, costly, specialized care, and face a lifelong risk of permanent disability and premature death.

DoD-sponsored medical research related to CHD directly impacts the health and lives of the U.S. military, veterans and their families. As just one example, researchers are investigating what might explain higher rates of birth defects, including CHD, among children born in military families like these:

Iguina Family PhotoIn January of 2007 our unborn child was diagnosed with a complex CHD via a routine ultrasound. Our lives changed forever that day. We were given three options before his birth – one was a procedure of three palliative surgeries. There were no promises or no miracles that they could give us, but they told us that they would try to repair the tiny heart as best they could. Our son was born in May of 2007 with hypoplastic left heart syndrome, a congenital heart defect where the left side of the heart is underdeveloped and has no function, basically half a heart. Our son Lucas had open heart surgery at 3 days old, a second open heart surgery at 4 months old, and his final open heart surgery at two years old to repair the half a heart he does have. He had many interventions during those first two years of life and continues to do so today. His last intervention was a stent replacement in February, a few months before his 9th birthday. CHD is lifelong and its care is complex. Lucas’ father Carlos is a U.S Army veteran and in 2010 he decided to re-enlist in the U.S Army reserve. It is a huge sacrifice for our country and for our son. Joining the military has helped our family immensely. These last couple of years we have been able to benefit from TriCare Insurance for our son and take advantage of the many benefits the military provides. I say sacrifice because my husband does spend time away from us when he is on military leave and sometimes emergencies come up and I am left to take care of things on my own when he is away. This has become part of our lives, knowing at the end it is all worth it. Our son says he wants to be a soldier like his daddy one day. I pray and hope that with innovation and research he is able to fulfill his heart’s desires! The sacrifice is truly a big one for our family, for our son’s future, and for our country whom we proudly serve! – Jennifer Iguina, Orlando, Florida

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Riley Family PhotoI am active duty personnel with the United States National Guard and parent to a child with CHD, the most common birth defect and a leading cause of infant mortality. My daughter Sawyer was born with only half a functioning heart and has undergone two open heart surgeries before her first birthday. She has suffered liver failure, kidney failure, failed attempts to come off the ventilator after surgery, pulmonary hypertension, chronic low blood pressure, dependency upon several continuous infusions, countless trips to the operation room for procedures, three significant cardiac arrests, and three minor ones.  By some combination of incredible care and divine intervention, she survived. At eight months old, Sawyer was listed for transplant and 39 days later, she received the gift of a new, whole heart.  Now, 1 year later, we have many reminders of Sawyer’s struggle to live.  Her tiny chest is riddled with scars, she is fed primarily through a feeding tube, and we are playing catch up on all that she missed. We know that transplant is not a cure – that there is no cure.  We know that not all kids survive the storm of CHD. It is our greatest desire and responsibility to raise awareness, raise funds, and promote research for this incredibly prevalent disease so that more parents can watch their children thrive.  – Patrick Kelly, Indianapolis, IN

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Schuh Family PhotoMy daughter Rayna was born with complex CHD and it is nothing short of a medical miracle that she lived until it was discovered when she was 4.  Her broken heart required emergency life-saving surgery to reconnect her “plumbing” to get blood flowing in the right direction and repair an additional hole in her heart.  4 years later, our lives are still a struggle, as we deal with complications both physically and psychologically at home and at school.  Rayna prides herself on her strength and her courage, just like her father, Tim, a veteran of the Gulf War and her grandfather, a veteran of the Vietnam War.  Yet, CHD has certainly had a serious impact on this proud military family.  – Sara Schuh, Manitowoc, WI

Beyond helping people affected by CHD, this research can also help to save money for the military health care system.  Another DoD funded researcher, Dr. Cecilia Lo, has explained how her CHD research “can help reduce healthcare costs for the Military Health System. One study showed an average bill of over $500,000 in the first 2 years for patients with a severe CHD known as hypoplastic left-heart syndrome. Hence, clinical outcomes research that can reduce postsurgical complications will have benefit not only for the patients and their families, but this can also help lessen the economic burden on the Military Health System.”

Research has brought us so far in the last few decades. Children born with critical congenital heart disease just three decades ago would not have lived past the first few weeks of life. Research can also take us so much further in the coming years. However, for this to happen, it is imperative that we not let our Federal commitment to research falter.

We need research, not red tape: Tell your Senators to support Amendment #4369 to S. 2943, the fiscal year 2017 National Defense Authorization Act, today!

Mothers Blog Series Recap

Your voice matters. For the month of May, PCHA recognized mothers of children with CHD through our Mothers Blog series. The fight to conquer CHD is strengthened by the involvement of all of those who share our mission. It takes a community coming together around education, research and awareness to make an impact. Volunteer, join our advocacy network today, and connect with us on Facebook! In case you missed a post, below is the full Mothers Blog series:

Mother’s Q&A Panel: Mothers of kids with CHD answer relate-able questions

A Thank You Note to Our CICU Nurse: Amy writes a heartfelt letter to her son’s nurse

Expecting a Rainbow Baby: Pregnancy After CHD: Jen tells her current journey of pregnancy after CHD

Prevailing Over the Unexpected: Jess shares how CHD has shaped her perspective on motherhood

Finding the Spirit of Mother’s Day, Every Day: Margaret speaks from experience on relieving stress

A Mom’s Promise of Hope: Tori shares about finding hope after loss

Mamas, May the FORCE Be With You!: Jennifer uplifts mothers using the F-O-R-C-E

 

Mamas, May the FORCE Be With You!

To close our Mothers Blog series for May, PCHA is delighted to have guest writer Jennifer Page, probably best known to you as Mini Darth Vader’s mom! Her son Max was the Mini Darth Vader from the 2011 VW Superbowl commercial. Jennifer speaks nationally about her family’s journey of transformation. She is a special contributor to CNN, Ladies Home Journal, and Cincinnati Children’s Hospital Heart Institute

Once I entered the foreign land of Congenital Heart Disease, I was forever changed. It’s a strange place where I feel helpless and strong … impatient and patient … frightened and peaceful. Raising my son with a life long illness has brought me to my knees, challenged me to dig deep spiritually and eventually hone coping skills necessary for this unpredictable ride.

My son, Max, was born with a broken heart and a variety of other complex issues. He is 11 years old and has endured 11 surgeries. Each time we hand him over, we just pray he returns mended and whole. Last summer he was facing 2 surgeries and he wanted to discuss heaven. He cried as he contemplated heaven as a possibility. He whispered he knew he should be happy about heaven – but there is still so much he wants to do.

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In true Star Wars spirit we have learned how to find and use our FORCE to shine bright in the midst of struggle.

F – Forgive – I have learned to forgive people who didn’t even know they hurt my feelings. I have forgiven people who I wished would show up better for me. Most importantly, I have forgiven myself. I didn’t cause Max’s condition. As a mom, I just felt so responsible.

O – Optimism – This is a deliberate choice I must make everyday. Robin Roberts, ABC Good Morning America, fought a tough cancer. She wisely said that optimism is like a muscle and you have to work it out everyday, because it takes just a pinhole of darkness to bring you down. So true.

R – Receive – At some point in this journey the scales of reciprocity tip and I am unable to repay the kindness and love that people want to pour into my family. I am a much a better giver than receiver. Receiving is humbling and it’s a reminder that I am in need. Allowing the love in has been a huge area of growth for me. I changed by simply saying YES to a nice offer – instead of my knee jerk NO reaction.

C – Commit – Grief and gratitude are my biggest drivers. I find that committing to a cause and serving others helps this story make sense. I heal a little more each time I give. Start out small. I’ve found that God will give you amazing ways to make a difference once you commit.

E – Experience – Meeting other families and sharing common experiences is one of the greatest blessings of this ordeal. It took me a while to be open with my story. Almost as if I didn’t give it a voice, then it wasn’t real. Now I lean on, learn from and love my heart friends beyond words.

There is no right way to handle adversity. If you are like me, you will fumble a bit and eventually find your stride. God doesn’t promise us a smooth ride, but if we keep showing up then he can bless the mess and create something beautiful.

And to you sweet Max … I love being your mom … May the force always be with you.


get-attachment-1.aspxJennifer Page is a passionate leader with Children’s Hospital Association, Children’s Hospital Los Angeles, several health related charities, manages The Alderson Family Foundation and dedicates countless hours giving back to her community. Before she became Vader’s chauffer, she earned a Communications Degree from University of Montana, played collegiate golf and managed golf courses in Southern California for 8 years. She is forever grateful for the organizations that have helped her son Max flourish despite having a medical challenge. Jennifer lives in Orange County, California with her husband Buck and sons Max and Ellison. Their dog and a turtle round out the zoo!

A Mom’s Promise of Hope

PCHA is honored to have Tori Smith, a volunteer on the Program Committee, speak about her son Sterling. She recently led a bereavement breakout session at the Congenital Heart Legislative Conference in Washington, DC in February 2016.

When Sterling died I hurt. Physically. Every inch of my body was feeling the pain of losing my son. In the days and weeks after his sudden death I was barely functioning. Crying and forgetting to eat. I would replay the moments leading up to his sudden death over and over again looking for the moment when I should’ve known something was wrong with my baby. Looking for the moment when I was supposed to save him. I was exhausted and yet unable to sleep. I was sure this was somehow my fault and afraid I would lose my other sons at any moment.

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I began looking for help almost immediately. I had never before felt this kind of intense pain or felt this alone and scared. I found some online help from those who had experienced the death of their child as well. While it helped having other moms to talk to who understood, I was still looking for someone to come along with a list or some magic words, maybe a pat on my head, something to take the pain away. I would’ve paid any amount of money and traveled almost anywhere, done almost anything to take the pain away.

After going to hear grief experts speak, many counseling sessions and even paying a lot of money to talk to psychic mediums, reading every book I could, looking into many religions for answers, I finally realized something. I was going to have to feel it all. There weren’t any words I was going to hear that would make me feel better. Being honest with myself, the only thing that would make me feel better was waking up from this nightmare holding Sterling in my arms again. And I knew that was never going to happen, not in this life anyway. I realized in that moment that I would need to be my own parent, so to speak. I would need to take care of me. I would need to listen to my heart and let it guide me. I realized that as long as I am living, in many ways, so is Sterling.

I began working out at a gym. Every single day I would pack my boys up in the van and drive to our gym. In the beginning I would walk the treadmill, ear buds firmly placed so I wouldn’t have to socialize with anyone new. Staring straight ahead, hoping no one would see the tears in my eyes. I was so tired I could barely walk very fast or get very far. But I noticed when I walked, I would sleep a little better at night. I noticed that I needed that time to myself to collect my thoughts and work out the feelings that weren’t doing me any good. I began adding classes one day and talking to people. I started getting physically stronger. I began feeling alive again.

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From day one, I was talking about what happened with anyone who would listen to me. Once we knew the name of the monster that took Sterling from us, I began researching it like it was my job. Sharing the facts I would find on social media. Wanting to change the outcome for other parents. I found myself being introduced to people and being asked to share my story more and more. I traveled to Washington, DC, twice, to share my story in the hopes that another family would never have to live this nightmare. It was never easy leaving my kids, traveling to another state, and talking about the hardest days of my life with strangers, but in doing so, I found healing.

I also started a project with our local hospital. I would make little blanket loveys using giraffe material. Sterling had a little lovey and he loved his Sophie giraffe. So I combined the two and attached a card with the signs and symptoms of CHD’s for parents to know what they might be looking for. We would give these out to all the babies born on his birthday at the same hospital he was born at. The next year we had enough for a week, then a month. My hope is to turn it into a year round project.

IMG_0639Which brings me to this word, hope. How does one find hope when you’ve held your child’s lifeless body? When you have experienced unanswered prayers for healing in this life. Made funeral arrangements for your baby, the baby you just celebrated his first birthday not even 2 months prior. When you physically hurt from the top of your head, to the point where even your hair hurts, to the tip of your toes. When you feel like you died too. Where is the hope then?

It’s there. I promise you that. It’s in the breath you take after your child takes their last. It’s there as you gently cradle their body long after they have left it. It’s in every moment of the hours and weeks that turn into months and years after. It’s the moments when you feel your baby on your chest when you close your eyes in the silence. The moments you decide to go through their clothes and donate or save them. It’s there. Even if you don’t feel it. I promise you it is indeed there.

My only advice is to love yourself the way you loved your child. Make sure you eat well. Drink lots of water. Try to exercise, even if it’s walking up and down the street or your own stairs in your home. Be sure to share as much or as little as you feel comfortable doing. Rest. When your heart is shattered into a million pieces and the pain is unbearable, find something that makes you feel again. Find people willing to support you, maybe even push you a little. There is healing, I promise. That is the hope in all of this. Living when your child has died isn’t easy, but I plan on being here for a long time telling you all about a little boy named Sterling who stole my heart, and I would love to hear all about your sweet child too.

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Sterling’s Momma and his Bubbas living life with hope, love and joy.


IMG_0697Tori is a mom to six. One grown daughter and five young sons. Three of her sons have CHD’s. Sterling is the youngest and was a very happy, healthy looking 13 month old until his sudden death. It would take eight months after his death for the family to get answers as to what took Sterling from them, multiple congenital heart defects. At that moment, Tori knew she had to do something. She uses social media to raise awareness and to connect with other CHD families, started Sterling’s Heart Loveys, and is beginning to speak more publicly to raise CHD awareness. She has been invited to join the 2016 Consumer Task Force for Baby’s First Test, the nation’s educational resource center for newborn screening. Tori is also starting a Mended Little Hearts Chicago support group in her hometown with another CHD mother. You can read more about her journey in finding hope after loss at findinghopewithoutsterling.blogspot.com

Finding the Spirit of Mother’s Day, Every Day

Speaking from her own experience, our recurring guest writer Margaret King joins us this month for the PCHA’s Mothers Blog series with her advice on relieving stress and finding joy. 

Mother’s Day has come and gone with ads selling products designed to give us relaxation and joy – massages, flowers, jewelry, and more. And if those products bring the desired effect, so much the better. I suspect, however, that some – if not many – of us moms would relish the stress-reducers and joy-givers that don’t cost anything at all. A nap. A full night’s sleep. A sparkly-clean house, even if it only stays that way for a day. Homemade breakfast in bed. Maybe lunch and dinner too. Why not go big? Mother’s Day came for you, hopefully, with a bit of permission to relax.

Moments to relax are not just a much needed permission, but absolutely essential for survival and sanity for any caregiver. Sadly, like many other heart parents, I reached a point of crisis in my health before I decided to turn my attitude and life around. If I had known then what I know now … so I’m writing from my learned mistakes to inspire you to reduce your stress, and make every day (or in the least, a few minutes of every day) contain a little bit of the spirit of Mother’s Day.

Let go. Remember this journey is primarily your child’s. If you find yourself feeling like you are living your child’s story instead of your own as a heart parent, take a step back. We are our child’s advocate, but we also need to let our children claim ownership over their own story and empower them to tell it as they get older. Depending on your child’s developmental stage and age, that can mean anything from getting them to recognize their own basic need, like regulating their physical activity levels or carrying a water bottle to stay hydrated on hot days, to becoming responsible for taking their medications and living a healthy lifestyle into adulthood. It means gradually transferring responsibility for their health and attitude over to them.

Remember who you are. Yes, you’re a parent. And not only that, a heart parent. Maybe you have multiple children, maybe you’re dealing with multiple diagnoses, but you’re also an individual. And all people have needs regarding self identity, emotional well-being, and physical health. Just like your child is much more than a diagnosis, you’re much more than a heart parent. Take time for yourself.

Get healthy, stay healthy. Stress can weaken your immune system. Add interrupted sleep, or lack of sleep on top of that, and you’re on a fast-track to getting sick more often. This often results in still more stress and poor sleep, creating a vicious cycle. Eat healthy, get cat naps, exercise, or even try deep breathing or meditation. With a million thoughts going on in our heads simultaneously and endless lists we’re constantly checking, meditation can help you focus on the present, letting your attitude readjust and recalibrate.

Take a break. Sometimes all we can do is … nothing. There are days when we try to control situations that are uncontrollable. We may tell ourselves, “if I take a break, the world will fall apart.” The weight of this statement has tricked most people into near-breakdown and paralyzing fear at it’s breaking point.  We’re willing to run ourselves into the ground before admitting that we need help. When it seems too daunting, take one day at a time. Tell yourself, for as long as you need to, that just getting through each day is enough for now. If a day seems too daunting, take it by hour or by minute. On the show Unbreakable Kimmy Schmidt, Kimmy says she survived by taking life 10 seconds at a time. You’ll look back someday and realize what a tremendous victory that was, and how far you’ve come!

Unplug. When the going gets rough and you’re feeling the weight of your family’s situation, maybe you don’t need to see your friend’s Facebook photos from their latest trip to Hawai’i. People who are feeling stressed and anxious to begin with are more likely to compare themselves to what they see on social networking sites. And we all know that it’s not a good idea to compare our real lives with other people’s highlight reels. I once heard the advice, “If you’re not even happy with what you have, why would you be happy with more?” I found this to be a profound message. A simple change in perspective has kept me focused much more on the positive.

Find allies who share your situation, but also some who are removed from it. Seek friends and support groups, but stay friends with some of your old tribe, too.This comes with an important caveat: stay friends with those who are positive and supportive, not those who leave you drained and emotionally exhausted. On this journey, you need every ounce of strength and resolve you can muster. You will find out who your real friends are. The ones left standing are the most awesome tribe you could ever ask for–treasure them, and release the ones who can’t be in your life anymore. Wish them well. After all, they’ll need to find new friends, too. Not all of your allies need to be friends or support group members. They don’t need to share your diagnosis at all. Some might be acquaintances, a distant relative or two, a mentor, neighbors. These are people you can count on to always be friendly when you see them, be understanding of your child’s sensory overloads and bad days, and can maybe even pop over and feed the cat for you if you have an unexpected hospital stay. They offer some of the benefits of friendship without the obligations and expectations.

Recognize your limits. Be mindful of your warning signs and pull back before you snap. It’s understandable that sometimes our moods are pushed to the limits. Maybe there’s a substitute teacher who forgot to look at your child’s health plan, your child’s prescription co-pay just went up, and you need to call the hospital billing department about the latest total that doesn’t make sense. So when you pick your child up from school, and a fellow mom whips open her SUV door, whacking your child in the head with it (true story!), you snap. I’ve learned that blowing my top leaves me with nothing but regret, hurt feelings, and damaged relationships. So instead of unleashing a torrent of angry words, thank goodness, I silently herded my sobbing child into the car icily driving away because I had no more polite words left even with the mom’s apologies. On these days were I’m reaching the end of my rope, I take a big step back, take deep breaths and remind myself to remain as calm and pleasant as I possibly can, because it’s just not worth releasing the pressure valve on an unsuspecting neighbor, friend, or hospital employee.

Most importantly, be kind to yourself. I fail a lot less, and am more joyful, when I recognize that I am capable of failure. Don’t set yourself up with the pressure of thinking you should, and can, do everything. Think about the people you love, your loved one, a parent, child, good friends, anyone you really care about, and think about how much you long for them to be kind to themselves. Then, extend yourself that same kindness. Give yourself permission. To breathe. To take a step back. To have a cup of tea. To write that memoir or take that kickboxing class. To start that online business or train for that 5K run. To not be perfect. I know you can. Give yourself this gift not just for Mother’s Day, but every day.


Blogger_King_MargaretMargaret King is a business content writer and mom who loves spending time with her family, avidly reading, community gardening, traveling, and exploring the outdoors. She is currently working on a young adult fiction series and enjoys flash fiction and science fiction writing as well. Margaret has worked in the past teaching English abroad in Nepal and Mongolia, which she counts among the best experiences of her life, along with her heart family journey which she is so happy to share with our readers.