On the subject of famous people with CHD, this is a post by Amanda Rose Adams. I should note that this post is a year old, and she has posted again about the same subject recently.
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Famous People with CHD
I’m still working through the publishing process. My pitch and proposal are written, and I intended to approach small publishers directly, but I have changed my mind and am now searching for an agent. During the course of this search, I discovered that Sylvester Stallone has a child with CHD, as he wrote a forward to a book about CHD. This brought me to a search for famous people with CHD. I discovered this fascinating list, compiled by another heart mom (also named Jennifer – we’re everywhere!), and I wanted to share it here. This is the list as well as the direct link to her blog (I have not changed the list at all):
http://anotherchdjourney.blogspot.com/p/famous-people-with-chd.html
“Famous People with a Congenital Heart Defect
- Shaun White – Olympic Snowboarder (Tetralogy of Fallot)
- Mark “Fight Shark” Miller – MMA Fighter/Kickboxer (Aortic Stenosis)
- Joe Strummer(21 August 1952 – 22 December 2002) – Clash front man, passed away due to undiagnosed CHD at 50.
- John Glascock(2 May 1951 – 17 November 1979) – base guitarist, Jethro Tull. Died at 28 from CHD complications.
- Max Page – Child Actor and Darth Vader in VW Superbowl Ad (Tetralogy of Fallot)
- Tedy Bruschi – Former Patriots linebacker and ESPN Commentator (Atrial Septal Defect)
- John Ritter(September 17, 1948 – September 11, 2003) – Actor, passed away due to undiagnosed Congenital Heart Defect
- Paul Cardall – Pianist, Complex CHD/Heart Transplant (Paul has a great CHD Blog at http://mytricuspidatresia.blogspot.com)
- Brian Littrell – Member of the Backstreet Boys (Ventricular Septal Defect)
- Jessie J – Singer (Wolff-Parkinson-White syndrome)
- Bret Michaels – Lead Singer: Poison (Atrial Septal Defect)
- Carroll Shelby – automotive designer, racing driver and entrepreneur (Unspecified congenital heart valve disease)
- Steve Hutchinson – Pro Football Player (Tennessee Titans-Guard) (Unspecified Heart Defect)
- Damon Daniel Weber – actor (Deadwood) Father wrote a book about his passing from CHD post transplant called “Immortal Bird“. (Hypoplasia, possible HRHS)
- Corey Smoot – Musician (Flattus Maximus in GWAR). Passed away suddenly due to previously undiagnosed congenital heart defect. (Unspecified coronary heart defect)
- Robby Benson – Actor/Director and author of medical memoir “I’m not dead…Yet!” detailing his life with CHD. (Bicuspid Aortic Valve)
- Kirk Urso – Professional Soccer Player with the Columbus Crew. Passed away in 8/2012 from undiagnosed unspecified CHD.
- Kat Edorsson – Reality TV (Survivor). (Unspecified CHD, 2 OHS’s)
- Jimmy Osmond – Musician. (Atrial Septal Defect) (* three of his brothers, two of his nephews, and his daughter were also found to have ASD)
- John Fox – Denver Broncos Coach. (CHD – Nonspecific Aortic Valve)
- Whitney Duncan – American Country Music Artist, contestant on television show “Survivor”. (Atrial Septal Defect)
- Mark O’Shea – Country Music artist and one half of the award-winning married country duo “O’Shea“. The duo incorporated heart kids into their video for “Thank you, Angels” (Tetralogy of Fallot)
Famous Heart Parents with CHD Kids
- Bret Baier – Fox New Anchor (Son with d-transposition of the great vessels)
- Sylvester Stallone – Actor (Daughter with Ventricular Septal Defect)
- Katherine Heigl– Actress (Daughter with CHD)
- Matt Hammitt – Lead Singer of Sanctus Real (Son with hypoplastic left heart syndrome)
- Senator Ron Johnson – Junior Senator (Republican) from Wisconsin (Daughter with Transposition of the Great Arteries)
- Roger Rosenblatt – an American journalist, author, playwright and teacher. His book Making Toast, details losing his daughter Amy to an undiagnosed/asymptomatic CHD and the aftermath of her death.
- Tom Riles – Warm Up Entertainer for the Ellen show (Daughter with CHD)
- Charles Tillman – Chicago Bears (Daughter with Cardiomyopathy)
- Mark Feuerstein – actor, “Royal Pains” (Daughter with ALCAPA)
- Greg Olsen – Carolina Panthers tight end (Son with hypoplastic left heart syndrome)
- Aaron Shust – American Contemporary Christian Music artist (Son with CHD)
Please note this is a list of people that are in the public eye for something other than Congenital Heart Defects.
This specific list is only for those people who are in the public eye for something other than CHD but who also happen to be a heart parent or a CHD Survivor.”
Let’s Take the Heart Child to the Dentist! In the Snow.
When I think about fun, I think about the dentist. When I really want some excitement, I take the heart child to the dentist. And his brother. At the same time. Because you can never bring enough children under 10 to the dentist. Maybe next time we’ll bring a friend!
Yesterday the boys had their 6-month check-ups at the pediatric dentist. This is always stressful for all the obvious reasons, but, since Corey is a heart child, we get to add in the extra bonus stress of taking antibiotics before the visit. Why does he have to take antibiotics before his routine dental check-up, you ask? Some doctors/dentists feel that there is a great deal of bacteria stirred up during a dental procedure (including cleanings), and therefore it’s a good idea to take precautionary measures for people with compromised hearts. We don’t want the bacteria infecting Corey’s heart.
Corey, thankfully, swallows pills. We hand him his baby aspirin (the only medication he takes daily) after dinner every night, and he just swallows it with his drink. It’s handy when he needs ibuprofen and anything else too. Except the pre-medication for the dentist. This used to come only in liquid form, and he had to take 40 milliliters (8 teaspoons) of that nasty “cherry” flavored gooey foulness. Which he just loved doing, as you can imagine. If you add cherry flavoring to dog poo, do you think it tastes any better? Right. And for any of you that have given your kids liquid medication, you know that 40 mL is a LOT of liquid. Four of those 10 mL syringes. Ack.
So at 7 am twice a year I get to negotiate, cajole, coerce, beg Corey to take all this horrible medication. Once, when he was younger, I just had to hold him down and force him to take it. He cried the whole time and I felt like Conan the Barbarian. I think we’re both still scarred by that incident. But! This time there was finally a pill option. Four shiny little pills – hallelujah! I ask every time for the meds to come in pill form, and every time the pharmacist and the dentist both say “no.” Not this time. They said “yes!” Corey swallowed his four pills like a rock star, and we were ready to go!
Except that it was snowing. Did I mention that it was snowing heavily the morning of the appointment? Heavily enough to close schools? Right. Let’s go to the dentist in the snow!
On second thought, I decided I wasn’t going to do that. Their father was going to do that! I am a full-fledged snow weenie. That’s right – I said it. I do not drive in the snow. If there are 3 flakes outside my window, I’m not driving anything other than a sled. But Damian isn’t. Daddy to the rescue!
Corey took his pills, everybody got bundled up, I handed Damian a steaming hot mug of coffee, and off they went! The roads were bad, but the appointment went well for both boys. In the past, because Corey has weaker teeth due to his CHD, Corey has needed to have some cavities filled. Not this time! It was a clean bill of health for both my boys, and everybody came home safely a couple of hours later.
And then we went sledding……
Fear Factor
We are all afraid of something. Or perhaps we are afraid of many things, but there is one thing that comes immediately to mind when someone asks, “What are you afraid of?”
I was trolling the WordPress daily prompts again, contemplating the different ideas tossed out to bloggers. One suggested writing about a time when you ate humble pie. I thought, “Well I must have eaten humble pie at least a dozen times, but I can’t think of a single specific scenario worth writing about.” So I ditched that one. Next!
I found “fear factor” (http://dailypost.wordpress.com/2013/11/28/prompt-fear-factor/) and thought, well this one is obvious. My greatest fear is probably the same fear that all parents of CHD children share. I am afraid my child will die. It’s hard to acknowledge this fear. It’s hard to say it out loud. Somehow that makes it more real. But it is there. I just choose to live around it. In spite of it. I remind myself that tomorrow is promised to no one, and whatever may come next, I have done right by my child.
I’ve thought about it a bit more lately, because of the good news I received from my cardiologist about my own heart. Fearing that you may outlive your own child is a terrible feeling. And so there was some small comfort in knowing that my own heart was weak, and maybe I wouldn’t have to suffer that fate, simply because I would go first. Before my time, but before his time as well. I am glad to know that I will be here to see both of my children grow up, but now I have come back again to the idea that it might not be me first.
I have a friend whose child has cystic fibrosis. Sometimes I wonder how she lives with this. And then I think she must live with it the same way I live with Corey’s tricuspid atresia. I remind myself, tirelessly, that Corey lives well and is happy now. I remind myself that where there is life, there is hope. I remind myself that it is not in my control. It is not in my hands. It’s in God’s hands, and I just have to accept the road ahead as it comes.
But I really hope the road ahead is less rocky than the road behind.
PS – Thanks to The Huffington Post for making me laugh with their hilarious fear photos from the Nightmare Fear Factory. (http://www.huffingtonpost.com/2012/10/18/nightmares-fear-factory-haunted-house-photos_n_1980308.html#slide=1646897)
Simply Irresistible
“She’s so fine, there’s no tellin’ where the money went!” Who else started singing that after reading “Simply Irresistible” in the title? Now it’s stuck in my head. Sorry.
Okay, this post isn’t about Robert Palmer. It’s about something else irresistible. Food! If you’re like me, you’ve just come off of a week of fabulous feasting with the fam. (Corey tells me that’s a good example of alliteration, by the way.) I love Thanksgiving. I love that people start talking about what they are thankful for. It’s great to feel all the positive vibes. I certainly have a lot to be thankful for myself. But instead of talking about that, I’m going to talk about food! Which I am also thankful for, in case there’s any question.
The daily prompt on WordPress gave me the idea (http://dailypost.wordpress.com/2013/11/26/daily-prompt-irresistible/). The prompt asks for a description of the one food you can’t turn down. The prompt invites you to use words that will make our mouths water. I’ve never written a food blog or food article before – this could be fun! (sitting back and cracking my knuckles) Here we go….
The one food that I can’t turn down is (wait for it) – Twinkies! I’m kidding. I actually haven’t eaten a Twinky since I was a kid. I don’t even know how to spell “Twinky” – does it follow the usual rules of “y” turns into “ies” when pluralizing? I don’t know.
So the truth is, while I love almost everything on the table at Thanksgiving – the turkey, the mashed potatoes, the sweet potatoes, the gravy, the cranberry sauce (both from scratch and the kind that mysteriously holds the shape of the can), the stuffing, the wine, etc. – while I love it all, the one thing I can’t turn down is my mom’s homemade pumpkin pie. It’s simply the best.
She makes the pie from scratch, rolling out the dough, mysteriously using ice water in the preparation, and ending with a crust that is both rich, flaky, and a lovely honey-color to look at when she’s finished. And then there’s the aroma – mmmm. It reminds me of happy times in the kitchen growing up. Those cinnamon scents floating through the air. And finally, the taste – the pie when it’s warm from the oven is a gorgeous caramel color, and when it’s topped with fluffy white mounds of the snowiest white whipped cream – oooooohhhhh! Every bite is a velvety, creamy delight which ends with a taste of flaky, buttery crust. I can’t resist.
This year, she made me my own pie. A whole pie. Thanks Mom.
Do you want some pie now?
Happy Thanksgiving!
People are coming to my house!
I don’t know if you heard, but next week – it’s Thanksgiving. Next week. Thursday. Like five days from now. What does this mean? Well it means that I’m going to eat and drink like it’s my job on Thanksgiving day of course! Where are my cookie pants? But I realized as I was walking home from the bus stop today that it also means there are going to be people. In my house. People whose names are not Corey, Mason or Damian. Whose last name is not Fleming.
As I came to this realization, I walked through my front door. And do you know what I saw? I saw dirt. A LOT of dirt. I don’t know about you, but there’s nothing like imminent hosting responsibilities to make me look at my house in a new light. I clearly had not even glanced at my floorboards in months, because I saw a layer of dust befitting an abandoned building. Guess what else I saw. Brown grout. I looked at the poo-colored grout in my tile floor and thought, this could really warrant a call to child services. I think if my mother-in-law or my sister-in-law saw my grout they might use the “f” word. You know – “filthy.”
Since the preschool that I’m subbing at didn’t call me in today, I thought, now is the time to attack this dirt! I changed into my grubbiest clothes, put some music on the TV (does anybody even have a radio anymore?), and I broke out the green sponges that could scour the hide off a cow, got down on my hands and knees and got down to it! I am happy to report, many hours later, that my grout looks good. I have hooker knees now, but the grout – it’s good. Good non-poo-colored grout.
I still have to buy food/plan a menu/wash stuff/get booze/find my underwear – I mean, wait. Scratch that last part. This isn’t college anymore. Anyway, let’s face it – prepping for a holiday, even one as wonderful as Thanksgiving, is a boatload of work. So instead of freaking out about the 800 things I have left to do, today I am focusing on the fact that my kitchen – and my grout! – is clean.
Happy Thanksgiving-prep time, everybody!
An Interview with the Heart Child
We all know what I think about about the heart child and his miraculous journey. But what does HE think? I got the idea from wordpress, (http://dailypost.wordpress.com/2013/11/16/daily-prompt-details/) and I interviewed Corey to find out. I did this while he was trapped in the bath tub with his brother. He couldn’t just run away from me with bubbles plastered over every inch of his body. Here is what the 8-year-old with tricuspid atresia had to say:
Q – Corey can I interview you?
A – Yes.
Q – What’s it like to be a heart child?
A – Fun ’cause you get all the attention.
Q – What’s the best thing about being a heart child?
A – You get to have a cool big scar.
Q – What’s the worst thing about being a heart child?
A – You can’t go on roller coasters or anything with G forces.
Q – Does anybody think you’re weird because you’re a heart child?
A – No.
Q – Was having your big surgery scary?
A – No it wasn’t, because I got all the pizza I wanted any time I wanted it.
Q – Is there anything else you want to say about being a heart child?
A – Uh, no.
Q – Do you win all the “biggest scar” contests?
A – Yeah. That’s the best.
Q- What’s it like to have a brother with a regular heart?
A – Cool because he doesn’t get as much attention.
Q – Did you like being a Make-A-Wish child?
A – Yeah, because I got to fly over volcanoes in a helicopter. And I went with honeymooners. Also there were a lot of watersides.
Q – How do you like school?
A – It’s good. I get all As and all CDs and one B. And I play a musical instrument. I play strings and I have a winter concert on December 10th if you want to come.
Q – Is there anything else you want to say?
A – Uh, I want Mr. Gold from Lego Figures!
Well doctor, am I going to live?
Usually when we go to Hopkins for the day, it’s related to Corey’s CHD. But not yesterday. Yesterday was for me.
My own heart is weaker than normal. This is a result of viral myocarditis, which means that a virus attacked my heart and left me with scar tissue. The attack and resulting scar tissue weakened my left ventricle. And it didn’t just happen once. It happened twice. A cardiac MRI (otherwise known as 90 minutes in a dark tube spent holding my breath – panic attack anyone?) showed two spots of scar tissue in my heart. Two viral attacks. Lucky me!
After the first viral attack, which happened around the time of Corey’s birth, my ejection fraction (ef) was 45% at its lowest. A normal ef is between 55-70%, though many experts consider 50-55% to be borderline normal. 45% is abnormally low. So I asked my cardiologist what my long term prognosis looked like. He hedged. This led me to believe that I was on borrowed time. He also told me that more children were out of the question. That news hit me like a sledgehammer in the face, because I only had Corey, and he has a life-threatening condition. What if I was doomed to have only one child, a child with CHD?
Because I am a firm believer in a second opinion, I went to Hopkins and got one. My Hopkins cardiologist, Dr. Schulman, disagreed with the other cardiologist and gave me the green light to have a second child. And thank God, I had my beautiful healthy-heart Mason.
But that wasn’t the end of the story. Another viral attack occurred, leaving my heart weaker, requiring me to take medication and dedicate myself to an exercise regimen that would strengthen my weak left ventricle. Which I have done, and happily my heart function has improved. Unhappily, however, Dr. Schulman advised me not to have the third child I wanted so badly. I was hoping for a little sister for Corey & Mason. But having a third baby would have meant leaving the babies I already have. I chose to stay with them. It was the right choice, but it still saddens me. Nobody should have that choice taken from them.
So where am I now, six years after the birth of my second child? Six years after the second viral attack? Has the medication and exercise worked? Am I still on borrowed time? How long with the boys have their mother? Will I live to meet my grandchildren?
To try and get some answers to these questions, I spent almost all day at Hopkins yesterday. There’s been so much new construction recently that Hopkins has more towers than a medieval castle. So I got there at 7:20 AM, checked in at the wrong tower, hoofed it to the right tower, and then finally had everything in order and plunked my behind in the waiting room chair at 7:55. At 8, the nurse came to get me, and it took 90 minutes to get my echo done. That’s a long echo, but not too much of a surprise. My shortest ever echo was 45 minutes – I am hard to image. ??? I’ve heard this grumbled at me so many times by so many different techs that it must be true. I wish they’d give me a lollipop and let me watch “Shrek” like Corey does for his echos.
I finally saw Dr. Sculman in the afternoon, and the news was good! Better than I hoped, actually. He showed me my heart. My ef has improved to nearly 50%! And there are no signs of hypertrophy (thickening of the heart wall). That’s the big concern with a weaker left ventricle. But all the exercise is keeping the muscle strong. Yay!
And that wasn’t the best news. The best news I got yesterday was that I will in fact live to see my grandchildren. Unless something else kills me, of course. But my heart is not going to give out. Dr. Schulman didn’t hedge on this point. He said with confidence that I look good and should continue to look good for decades to come. I love that guy.
The Fontan – the final surgery in the reconstructive pathway.
This is (hopefully) the last graphic picture I have to post, because (hopefully) the Fontan was Corey’s final surgery. Every year, on April 21, we celebrate Corey’s Fontanniversary. The anniversary of the day he had his Fontan surgery, April 21, 2009. The last surgery in the three-stage reconstructive pathway. We waited for the Fontan for years. All the time that we waited, I felt a fog of fear drifting over me. I tried to push it away and live my life with Corey, enjoying the time we had together, but it was always there.
Handing Corey over for surgery was extremely difficult every time. With the B-T shunt and the Glenn, he was a baby. That was awful – he was so small and helpless. But the Fontan brought a new set of challenges, because by then Corey was a four-year-old child. He walked, he talked, he asked questions, and he felt fear. We had to figure out how to get him through without scaring him. We had to feel our fear and hide it from him. It was a whole new ballgame.
April 21st came, and Corey had his Fontan. We hoped it would be a textbook event, as the previous surgeries had essentially been. It wasn’t. In the wee hours of the morning on April 22, the PICU staff discovered that Corey was bleeding internally. He had to go back to the OR. It’s one of the few times I’ve seen my husband truly terrified. Up to that point, Corey was on the path. But at that moment, he was off the path. Back to the OR he went for emergency surgery. And thankfully, he came through.
On April 28, 2009, the fog of fear that was with me for so many years finally lifted, and we brought Corey home. He was pink. So pink! His oxygen saturation levels were at a record high in the upper 90s. His energy level went through the roof! And there it has remained to this day. We did it!
Let’s have a wedding and major surgery in the same week!
I’m trying to power through the recreation of Corey’s CHD timeline. Let me start by apologizing for hitting you with another graphic photo of Corey post-op. You’re not experiencing deja vous. I posted a photo of Corey after the B-T shunt yesterday. This is a photo of Corey after the Glenn.
And with that, let’s get to it. On July 13, 2005, at around five months of age, Corey had his Glenn surgery. My brother – my only sibling – got married that same week on July 16, 2005. And thus I win the “worst timing” contest. Our pediatric cardiologist literally hid behind the giant hippo bed in the exam room when he delivered the news. I wish I had a picture of that.
Corey had his Glenn as scheduled, and my brother had his wedding as scheduled. Did I mention that the wedding was on the west coast while Corey’s surgery was on the east coast? Yeah. Good times. I flew across the country the morning of the wedding, slapped on my bridesmaid’s dress, attended the wedding and the reception, slept like the dead for five straight hours, got up, flew home, and went right to the hospital the next day.
Leaving Corey in the hospital was one of the toughest things I’ve ever done. But he was stable and surrounded by people who love him when I left, and he was stable and surrounded by people who love him when I got back. And on July 18, 2005 they sprung him from the hospital. My baby rocked his second surgery, and he came home stable for the first time.
Life was much better after Corey recovered from the Glenn.
jenniferannefleming 
