Thursday, May 22, 2008

Growing up with CHD, Part 3

Growing up with CHD: A Mother-Daughter chat

By Sarah Clark and Connie Walker

Hey everyone! I apologize for the delay on this post. this week has been a bit crazy in the Clark and Walker households, with me and my husband closing on our first house next friday and my folks packing up for a family visit in Virginia. Thanks again for your patience! After the draining experience that writing (and probably reading!) the last week's column turned out to be, we're going to dial things back a notch. Mom and I were talking on the phone the night before my second column posted, and liked my idea of co-writing the final article in this series. In fact, we're going to change things up a bit, and this article will be written as a interview with me asking and Mom answering questions about how my CHD impacted our family, what we're really proud of, and what, if we had it to again, we might do differently or wish someone had told us.

Also, what's next for my involvement with the CHD blog? Well, As you see, Kim has bestowed on me the honor of co-authoring this blog, and while she's certainly more of an expert on raising a kid with CHD, I'm looking forward to adding my two cents from the other side of the fence, so to speak. After my life settles back down from our move and a few work commitments I'd kind of like to put my librarian hat on for an article or two and share some tips on doing medical research. When I was young the issue for average folks was finding any information at all. Now thanks to the Internet, we're all drowning in data on any medical subject you can think of, of quality varying wildly from expert to quackery. I'll help you figure out where to search, what terms to use, how to effectively use your local public and university libraries, and how to evaluate what you find and discuss it intelligently and assertively with your kid's medical team.

Last, I want to share my contact info and mention a resource I've found useful. As I mentioned, I didn't really have any CHD role models as I grew up, came to terms with some very strange and heavy stuff, and became the productive and upstanding grownup (?) that I am today. Again thanks to the Internet, that no longer needs to be the case no matter where you live. While I spend far more time on Lifehacker, LOLcats and Writing-oriented blogs and forums than in the heart defect corner of the net, I'm a proud and slightly goofy member of ACHA-this association lobbies for the needs and interests of adults with congenital heart defects, sponsors research and education in ACHD issues, hosts a bi-annual convention for adults with CHDs, family, friends, and physicians, and provides a message board where teens and adults with weird plumbing can share their victories, support each other through tough times, or (mostly) be silly! You can drop me a private message there (I'm on as OKLibrarian), or simply zap me an email at If you're looking for the parental perspective, you can reach my mom and dad at and respectively. (Thanks again for volunteering to be spammed, Mom & Dad!)

Now for part 3:

Sarah: I know I've said this before, but why not let the whole internet know? I got very lucky to have you and Dad as parents. As I've mentioned, you helped me and Daniel survive some very...interesting times during our childhood, and we've somehow managed to both become mature, upstanding adults with spouses, mortgages and careers. What do you think were the most important things you and/or dad did that helped us get to adulthood with good mental and physical health?

Connie: We loved you. That simple--and that complicated. I'd like to believe it would have been the same regardless of health concerns or birth order, but who can say for sure. Life happens as it happens.

Whatever was happening in our lives, it was important to me that home meant safety--a retreat and refuge. We valued you two for who you were--not who we wanted you to be. We paid close attention to your interests and talents, and did our best to nurture them in every way we could. We also did our best to turn every perceived "failure" into a learning experience. By the time you were born, we had learned that resilience was the most important tool for a successful life. We made it our highest responsibility to make sure both of you had that tool!

Sarah: On the flip side--if you had it to do all over again, is there anything you would have done differently, or wished you'd known about in advance about raising a kid with CHD, or just parenting in general? (let's take not bringing me to see ET as read. *smirk*)

Mom: You've been very kind not to mention my worry-wart nature. It's my lifelong "defect" (can you tell I take strong exception to that word and what it implies...). When that worrying nature was applied to my deepest love--my family--I probably added unnecessary burdens to your lives. I wish I could have been braver. But as I've told you before, it could have been much worse! Without sharing my fears with you & Daniel, and forcing you both to prove to me you would be smart and safe, I would probably just have locked you in the house forever. It is a generalized fear...applied in its turn to my beautiful, first born, "blue" baby, crossing the street alone, riding the bike to a friend's house, dating, driving, calls from a deserted train station in Rome at 2 a.m. on Christmas know, silly stuff like that. (And on the topic of ET, if it's still traumatic, I'll be happy to make you another ET costume and let you parade up and down the neighborhood, like we did all those years ago!)

(Note: The author would like to commend her Mom for her very savvy desensitization of her daughter's ET-Phobia, and also remind her that she had specifically requested a phone call on Christmas Eve, and it was the only phone booth available by the time we left midnight mass @ the Vatican! The only people around anyway were a policeman, my backpacking buddies and a very polite transvestite panhandler...)

Sarah: My younger brother Daniel is the coolest guy on the planet, and hasn't gotten nearly enough attention in the first two parts of our story. Among other gifts, he has more musical talent in his little toe than I will ever hope to possess, and plays keyboards part-time with local jazz and funk bands in addition to his career as an Industrial Engineer. However, he and I are very different people-he is a logical, laid-back guy, quiet where I am outgoing, mellow where I am melodramatic. How did you handle raising two children, both very gifted in their own ways but with two very different personalities and needs, and how did you try to make sure that your "normal" kid didn't feel like he was shortchanged?

Mom: See answer to question # 1! Truthfully, he probably did feel shortchanged from time to time. Probably you did too. Sibling rivalry is what it is. But disrespect, in action or word, was not allowed between the two of you (at least not when I knew about it). Do you remember when one of you would say, "that's not love ____ more than you love me!" I always answered "yep, you must be right". That always shut off the pity party, because you both knew that was silly talk. We valued you both, and expected you to value each other. That mutual love, respect, and support of each other is still my strongest desire for the two of you. Different is good!

Sarah: I often tell friends that I had a idyllic 80's sitcom suburban childhood "with a few twists"- Often I don't think they believe me until they've seen enough of us all interacting to realize it isn't some weird passive-aggressive act! How did you and Dad find a balance between acknowledging the medical challenges I (and later Dad) had to deal with growing up with giving me and Daniel as "normal" and stable a childhood as possible? Also, do you think everything we went through made you and dad a stronger couple, and us a stronger family?

Mom: Well, your dad and I are at least as different from each other as you and Daniel are! I think it is extremely important to have both parents involved in a child's life. I know it isn't always possible. In fact, for a good portion of your childhood, dad was too sick to be as actively involved as he had dreamed of being. It took all of his energy just to keep on working, so we would be provided for. That makes us sad when we look back on the childrearing years. But those kinds of regrets don't really serve any purpose except to keep people from making the most of the circumstances they find themselves in. We just did the best we could with each day that was given to us.

To answer your question, reference my overprotective, worrying nature. One day, after listening to my many plans for keeping you safe from any danger, harm, hurt or substandard educational experiences, your dad, in exasperation, said, "Connie, we don't live in Mr. Rogers' Neighborhood!" He had hit the nail on the head. That was exactly where I WANTED to live. And I told him so. But it also made me laugh at myself. I knew you (and Daniel) couldn't live there forever, even if we could afford a house in the Neighborhood of Make-Believe. And so it went, with every "crisis"--potential, undeniable, or conjured up--we both spoke up about our fears, opinions and reasons, communicated (sometimes loudly) and came up with a solution we could both live with. The one thing we always knew was that we both loved both of you, and each other, very much.

Sarah: I'm not a parent yet- some days I barely have it together enough to take care of our cat! :-) Because of that, I'm guessing that I'm missing some stuff you think is important for other parents to keep in mind. Is there anything you'd like to say that I didn't ask you about?

Mom: Becoming active in a support group was probably the one thing we did that saved our marriage, family, and perhaps even your life. Lifeline, the support group at Children's Hospital in Oklahoma City, was the saving grace when you were first born. I dealt with guilt (what had I done wrong), anger (what kind of God would let these things happen to innocent children), fear (if she doesn't live, I can not bear to live either), and overwhelming love (surely everyone knows this is the most beautiful, marvelous child who was ever born). I worried about every sneeze, about helping you gain enough weight for the surgery, about how you were progressing compared to others your age. Some of that was heart, and some of that was first baby. The worries were real. But the focus of Lifeline (named by a family who called their child's scar her lifeline) was hope, support, education and friendship. I never thought of you, or any of those other wonderful children we grew to love, as defective in any way. You all were perfectly, wonderfully made.

Your correction eventually had an excellent result, but there were problems from the post surgery complications that we had to deal with. It is possible we might have defined you in terms of those problems, except for what I call "God's beautiful gift wrapped in a very ugly package". You had a respiratory arrest after the correction at 18 months. It was my blinding light on the Damascus road. All my anger at God about why--why you--why precious little children--why child abuse--all those hard things I saw at Children's Hospital--fell away when I saw them holding the paddles over your tiny, wired body. I knew in that instant that you never really belonged to me. You belonged to God. Regardless of my plans, actions or thoughts, I had no power of life or death. You were in my heart for as long as I had you, and for as long as I lived. My precious privilege, but not my possession. My child, but also God's child. And so, that very minute, I repented of that anger. I gave you back to God, and starting praying for wisdom and courage to raise you and support you in the life YOU were meant to lead. By the time Daniel came along, I knew what to do. I gave him back the day he was born! And I prayed for wisdom and courage to raise him and support him in the life he was meant to lead.

That is my advice to parents, CHD or any other. The only power you have is the power of love. See your children as what they truly are--God's children. Pray for wisdom and courage to raise them and support them in the lives they are meant to lead. It is that simple--and that complicated.


Thanks Mom, and I don't think I can really improve on her ending.

So, Is there a moral to my mini-autobiography? I don't know. You and your kids will have to visit and revisit this issue occasionally through their lives, no matter how "perfect" their outcome is. Aside from less than ideal physical stamina, and a few very minor hearing and motor control glitches created by my brain damage, I'm normal in pretty much every way you could define. And yet, every so often I've had to mull over these issues in my life, come to understand them in a deeper, more mature way, and make peace with them for another few years. It last happened around the time Kevin and I got married, this time it seems to be related to turning 30 and buying our first house, and it'll probably happen when/if we have kids and again when I retire. I suspect it's the same for anybody who's had traumatic experiences in their lives, i.e. 100% of the human population.

I started writing these posts for those of you, like Kim, whose kids have passed the crisis, and who are wondering "what now?" about things like self image and dating and all the soft psychological stuff that you can't really ask your cardiologist about. But I have to be honest and say that I was helped at least as much as anyone here by telling my story. Without realizing I was doing it, I gave myself permission to let go of a lot of my lingering guilt about being born as I was, yanking out that stupid vent tube when I was 18 months old, panicking that night when I was standing by the telephone, and all the other big regrets of my early life. I can't speak for all people with CHD any more than I can speak for all redheaded short chubby Librarians who watch too much Food Network. But in my case, having parents who encouraged us to share our feelings even when they were ugly or scary, who taught us resilience, and who encouraged us to achieve as much as our talents allowed helped me and my brother become strong, successful adults who work every day in our own ways to make the world better. And that, so I'm told, is the goal of every parent. I hope that hearing my story and Mom's will help in some way as you parent your kids. If you'd like to know more, we're no more than an email or comment away.

Thanks for reading,

US Cardiac Specialists to Assist in China

Team Of Top US Cardiac Specialists To Perform Critical Operations On Children In China
Medical News Today

16 May 2008. Heart disease is the world's most common birth defect, affecting one in every 100 children. Without treatment, one third of these children die before their first birthday. In developed countries, children are typically diagnosed and treated at birth. Children's HeartLink, an international medical nonprofit, is reaching out and helping build sustainable pediatric cardiac programs in the underserved regions of the world, to help more children have the same opportunity. May 17 - 24, Children's HeartLink will be sending a team of volunteers from New York hospitals on a cardiac medical mission to Changchun, China, to provide advanced training and participate in lifesaving operations on needy children.

Last September at the Clinton Global Initiative in New York, the Bracco/Children's HeartLink Initiative was recognized as it announced the commitment's estimated total value of $1,000,000. The partnership will provide life-saving training, equipment and direct patient funding to Jilin Heart Hospital, in Changchun, Jilin Province, China -- reaching more than 12,000 children in the next 3 years.

The project will involve the training of medical personnel at the Jilin Hospital in China. The Bracco/Children's HeartLink Initiative will reach an estimated 4,000 children a year with emphasis on improving the quality of care. "In China, congenital heart disease is the primary cause of death of infants. This Initiative has the ability to impact thousands of lives" said Elizabeth Bickel, President of Children's HeartLink.

More info...

Those of us in the US are often so focused on how under-served our children are as well as the lack of awareness that it's often easy to forget how very lucky we are to have the facilities and care available, even if it is at a significant, life-changing cost... many in other countries do not. We're looking forward to seeing the results of this significant effort undertaken by Children's HeartLink!

Friday, May 16, 2008

$1 Million Gift to Support Earlier CHD Detection

Washington, DC (PRWEB ) May 15, 2008 -- The Elsie & Marvin Dekelboum Family Foundation has announced a gift of $1 million to Children’s National Medical Center. The gift will allow the Children’s National Heart Institute to launch a Congenital Heart Defect Screening Study. Children’s National will name a three-bed bay in the new Cardiac Intensive Care Unit in honor of the Elsie & Marvin Dekelboum Family Foundation.

The heart defect screening study will focus on the effectiveness of an inexpensive device called a pulse oxymeter that could help identify more than 80 percent of life-threatening congenital heart defects. If initial findings are validated, the Dekelboum gift will enable Children’s National to promote its use in hospitals across the country and around the world – improving early detection and health outcomes for children everywhere.

Friday, May 9, 2008

An Award

A very special thanks to Emily, author of Lovely and Amazing and Gabriel's Heart for presenting this site with the Arte y Pico award for its creativity, interesting design and content. Check out my personal blog if you're interested in seeing who I'm recommending for the Arte y Pico award, as well as how to participate.

Thanks to Emily for her support, great blogging and wit! It's amazing who you meet in cyberspace...

Thursday, May 8, 2008

Growing up with CHD: Part 2

Part 2: And now the Bad (or at least challenging) Stuff

By Sarah Clark

First, my apologies for the length—as somebody once wrote, if I'd had more time to edit I would have made this piece shorter. Second, you're going to get tired of hearing this, but growing up with CHD was a relative non-issue, especially when I compare myself to people who suffered various types of abuse or neglect. However, that's not to say CHD wasn't an issue at all.

The first 10 years of my life were hard. About 3 years after my medical drama, my dad started having seizures, and it took several brain surgeries, countless drugs, and ten years of searching to find the cause and get them under control. (And he worked full time during all that!) So much happened to my family in my early life that it's hard to say what caused a given problem, and what just made it worse. However, the ones I'm going to focus on the issues that were there before my Dad got sick. I'm also glazing over some of the obvious fears you may have for your kids like body image and gym class traumas, because their effects aren't that much different or worse than any other kid's psychic bumps and bruises, and are treated in the same way. I'm a deep thinker, so I'd rather focus on the Deep stuff I faced, and that your kids might face as well.


The summer after my 3rd grade year, Mom and Dad went to UCLA for his big brain surgery. We shuttled between several relatives and family friends back in Oklahoma, who each gave us varying amounts of attention and affection. I could probably write a book about the experiences of that summer, but for the purposes of this article, I'm going to stick to the "Blacks". The Blacks were one of a few families my folks had kept in touch with from the CHD days. Their oldest, "Amy", had been a couple years older than me, and hers was the first funeral I attended (about 5 years prior to the summer we spent with the Blacks). She looked like something from a fairy tale with her blue eyes and blond curls. We'd played together some, but really all I remembered was that she was pale and kind of bossy. The Blacks had two younger kids whose ages roughly corresponded to me and my little brother Daniel, so we all got along well, and spent the several weeks we stayed there romping in the backyard and doing Kid Stuff. The only weird thing was the staircase.

The wall alongside the stairs to the second floor was a shrine to Amy. Every morning when I ran down to breakfast, I was torn between averting my eyes from and gazing in fascination at the dozens of photos, certificates, and plaques that lined the walls. Somehow I felt ashamed looking at them, as if I had no right to feel a slight pang of envy for the cute girl who'd gotten to be in front of so many TV cameras and meet so many interesting people in her short life. One afternoon I came back to the house when I got pooped from too much racing on my bike. I came in the back door and grabbed the first book I came across (I left books in my wake like Hansel and Gretel left breadcrumbs), and flopped down in Mr. Black's squashy armchair to read for a bit. I heard Mrs. Black's voice from the kitchen, and realized she was on the phone. Being 9 and nosy, I did the best I could to listen in. I can only assume she didn't hear me enter.

"She'd be thirteen soon…I know God wanted her because she was so special. She's probably the prettiest angel in His garden…," Mrs. Black continued, sharing her dreams for her late daughter to the person on the other end of the line. I sat in the chair, unseen, wanting to throw up. Maybe it was my carefully suppressed fear that I'd never see Dad again, or simply the fact that I was getting older, but for the first time in my life, her overheard words caused the full implications of the eternal question "Why?" to hit me like a ton of bricks. My mind whirled with rage at God, confusion at Mrs. Black's comments, and a strange dark tug at my soul that I eventually recognized as guilt. Did this mean that I was more special than Amy—which made no sense—she was angelic (when grownups were looking) even when she was alive. Or did it mean that I wasn't special enough? Had I done something bad to be born sick, or worse--was my survival some sort of bargain that made Dad sick? Had I made Amy die by praying to God to get back at her for pulling my hair? Her defect hadn't been that much worse than mine--why save a nearsighted geeky clutz with mouse-brown hair and no social skills? Why me and not Amy?

Nearly 25 years later I still have no clue on that one. If somebody here figures that one out, please let me know. It's certainly one of the strongest arguments I've come across for the non-existence of God.


I've had panic attacks, generalized anxiety, and phobias of various types and degrees pretty much since the day I woke up from my mustard procedure and the ensuing complications. Call it PTSD, brain damage, damaged seratonin receptors from spending so much time on the heart-lung machine--ultimately the cause doesn't matter. Store closings, unfamiliar doctors, elevators, Bs on report cards, any of those things could and did send me into panic attacks at various points in my life. Think twice before you put ET in the DVD player for the first time—I was 4 when I saw that in theaters and I went into a full-tilt inconsolable shrieking meltdown when ET "died". In fact, the only thing I seriously regret in my life occurred because at a moment when someone I loved needed my help desperately, I had a panic attack.

It was a week or two before Christmas. Mom was out for a "meeting with Santa's elves", and Dad was reading us a bedtime story in my brother's bedroom. He finished the story, closed the book, and stood up, preparing to tell me to brush my teeth and go to my bedroom. Then his voice trailed off, and he got a real funny look in his eyes, like he was staring 100 miles into the distance. Then he collapsed into convulsions, and knocked himself unconscious on Daniel's toy piano. Daniel (who was no more than a year old) started screaming, and I swung into action. So what if I was 5? I knew what to do, 799-HELP, I had the phone in my hand, I started dialing—and I froze.

All of a sudden I couldn't breathe, my heart was pounding a million miles a minute, and I started thinking a million different things—what if Dad was dead, and I was supposed to be doing CPR? Would the paramedics be mad if I called and he was dead and I'd wasted their time? What if dad woke up, and then the paramedics would really be mad because it wasn't a real emergency? Would they say "aw, you're just a kid" and hang up? No matter how I tried, I couldn't dial that phone. I hung up and crawled into bed weeping until Dad came to from his first seizure. Dad, of course, long ago told me there was nothing to forgive. I hope one day I can figure out how to be that generous to my younger self.

Since that night 25 years ago when I learned what my panic could make me do (or not do), I've fought a ruthless pitched battle against my terror in all its forms. It's been a foe more formidable than my circulation, by far. It's not just the sweaty palms and the 3 AM catastrophizing over whether I CC'd the right people on an email or if I paid the light bill. The person I loved most in the world needed me, and I failed him. I've come to terms with that (at least intellectually), but it will always gnaw at me, and give my anxiety the most potent ammunition possible when I try to fight it down. I have beaten it down to a dull murmur, but I will always have to be on the defensive--it often sneaks up when I least expect it.


Guilt + Anxiety=Perfectionism. Good enough is never good enough for me—I had a serious depression in my early teens and one of the greatest things that fed it was that I simply lacked the energy or motivation to do homework because I was brooding over my "deformed" body, my sick father, or the heavy existential questions mentioned above-- or hiding from that brooding via compulsive reading. That of course lowered my grades, made me feel worse about myself, and the cycle continued down for several years before I pulled myself up through therapy and sheer force of will. The perfectionism remains though—it took me 24 hours after the greatest physical success of my life, climbing the first third of the Great Wall of China at Badaling, to stop berating myself for not training hard enough to conquer the whole thing and to take pride in what I *had* accomplished. I've mellowed a lot since my "emo" teen years and become more balanced as I've matured. I've learned to use that impulse for good--it's certainly helped me out in my career.

The Kid Thing:

"Sarah, It would be a very good idea if you decided not to have children. Pregnancy could be very dangerous for you."

That was NOT the reaction I'd expected when I told Dr. Razook about my first serious boyfriend! I'd expected him to grin, remind me he'd told me so when I'd worried over my scars making me unattractive in previous checkups, and generally play the proud if protective surrogate dad he'd been through my childhood. Instead he asked to talk to me without mom in the room, asked a few delicate questions about what "physical contact" we'd done ("Peter" was president of the Bible Club and Math team and I was barely 16—we were both too nerdy and too scared of eternal retribution to try very much), and then Dr. Razook hit me with that bombshell. Peter and I parted the following year, but I will always remember how he came right over that night when I called, and held me as I cried, telling me that he still thought I was just as beautiful as before. Peter had his faults, but I've held every man I've dated to that standard when I've told them my medical history and its implications. I've been married for 6 years to a man who passed that test with flying colors.

Everyone's situation is different. People with TGA can and do decide to have children, and 15 years on I realize Dr. Razook's blanket disapproval was probably mostly his extra-cautious nature, and partially his impulse to slow down a teenager who was in too big a rush to grow up. However, I've read the studies, talked to people who've had both good and bad outcomes, and I came to the same decision. I feel it would be unethical to knowingly put a child at increased genetic risk of a CHD, and considering that a pregnancy might well complicate my uncomplicated outcome, I will NOT subject my child to growing up with a chronically ill parent if at all possible. Your kids' mileage may vary. Remember that "anxiety" stuff above? I'm a devout believer in Murphy's law.

Being a "miracle"

I'm sure you say it all the time—you've probably said it to your kids, or your friends, or had others say it to you. "You're a miracle". "Her recovery was miraculous." "God blessed us with a miracle". In the sense that at least one event happened to me that could not then be fully explained by medical science, I am a "miracle". I learned the story of my early life, surgery, and (at least metaphorical) rebirth as a wee child, right alongside Cinderella, Snow White, and Sleeping Beauty. My defect was never something to be ashamed of, and my parents told me to wear my scars proudly. From early on I knew I was destined for Great Things—God had saved my life, had He not? (I was still a little young yet to ponder either the "Amy Counter-argument", or wonder Who had been in charge of creating the situation where my life needed saving in the first place)

In addition to having a rather more dramatic origin story than most, I was intelligent. Scary, precocious, read off the menu at the restaurant when I was 2 intelligent. (apparently when the waitress complimented me on my literacy, my granny whipped up my dress to show her my scars, to my parents' horror…). Between those two things, every adult in my life was CONVINCED that I was going to do something amazing with my life—and from my earliest days through 3rd grade I complied. When maturity, hormones, and the events of the first decade of my life finally slammed into me as mentioned above, not only did I feel depressed for those reasons, my despair deepened because I wasn't living up to what I was Supposed To Do with my life, the mysterious, still-unknown reason I had been saved and made a Miracle.

When I clawed my way out of my funk in my mid-teens, I set myself to figure out what Great Work I had to accomplish to pay back the life debt of my miracle. I put myself under a lot of pressure and agony, and it was definitely a big part of the perfectionism. In recent years I finally got mature enough to throw up my hands and essentially say "God, if you exist and I have an outstanding bar tab, you're going to have to send me the bill via some sort of signal I'll understand. Otherwise I'm just going to muddle through the best I can, and try my best not to feel guilty over that." I've yet to get a bill, so I assume I'm doing fine.

As for the "miracle" thing? As a kid, I wore it with uncomfortable pride, like an Easter dress that was too itchy with starch and made me want to change back into anonymous jeans and a t-shirt. As a teen and young adult I hid from the descriptor or rejected it outright. Now? I don't even know if I still believe I'm a miracle (sorry mom), much less what I think about what that implies. I really am uncomfortable with and to an extent resent all the baggage that has come with being slapped with that 7-letter albatross. Then again, one doesn't get to pick and choose the good and bad in life. If not for the "Miracle" label…Would I be this determined, or this intelligent? Would I be wasting away in a job I hated instead of doing something I love? Would I be living such an (over)examined life?

The point to all of this:

I hope I haven't scared you too much, or convinced you that your children are doomed to a life of brooding and anxiety. Remember Part 1: I am so strong, and lead such a wonderful life in large part BECAUSE I faced these demons at an early age and came out whole on the other side. I don't mean to sound like a Pollyanna, and it is very likely that your children will need your help and possibly professional help in answering the very adult questions and fears that surround their very existence. Fortunately I had that. My mom practiced desensitization therapy long before it was in the books by gradually and carefully exposing me to my phobic triggers until they no longer set me off. Dad is a living example of how one can have a chronic medical issue and still live a productive and fulfilling life. My parents considered no topic taboo, and helped me talk through a lot of my early struggles. At crucial moments they got me to therapists who helped me sort out my thoughts and fears. My parents are the real heroes of this story—in my most honest moments I know that I'm afraid to have children because I simply could not do what they did—and what you do now. And while I feel somewhat unqualified to suggest things to you all, simply because I'm not a parent of a child with a heart defect, I'd like to wrap up this series next week with a list of Dos and Don'ts for raising a kid with a CHD. Hopefully I can talk Mom into co-writing…

Tuesday, May 6, 2008

Important: Digitek Recall

Though the recall happened on April 25, I talked to a parent today who did not know about this, so felt it was important to post.

If you or your child take Digitek, please see the recall on the
FDA website. Please spread the word to anyone who takes or may take this medication, as it seems that there has been little publicity, and many pharmacies are not aware of, or have been ignoring the recall.

"The voluntary all lot recall is due to the possibility that tablets with double the appropriate thickness may have been commercially released. These tablets may contain twice the approved level of active ingredient than it appropriate.

Digitek® is used to treat heart failure and abnormal heart rhythms. The existence of double strength tablets poses a risk of digitalis toxicity in patients with renal failure. Digitalis toxicity can cause nausea, vomiting, dizziness, low blood pressure, cardiac instability and bradycardia. Death can also result from excessive Digitalis intake. Several reports of illnesses and injuries have been received."

I read a blog today by one family (if I get permission, I'll add the link) that had been affected by the recall - their daughter was taking the double-dosage tablets. They posted the following photo showing the difference between the normal size (in this photo, Digoxin, the replacement for the recall) versus the recalled Digitek, which is quite larger.

Send Flowers to Mom & Help Raise Funds for Research!

LINCOLNSHIRE, Ill., May 5 /PRNewswire/

The Children's Heart Foundation today announced a new partnership with ProFlowers(R) -- the online fresh flower marketplace -- just in time for Mother's Day! Shoppers can visit and choose from a variety of beautiful, fresh-from-the-field flower arrangements. All year long, whenever flowers are purchased through the CHF page on ProFlowers, ten dollars from each purchase will benefit The Children's Heart Foundation (check out their new website!).

"Sending flowers to the mothers and grandmothers in your life is a great way to show your appreciation and celebrate their love -- and now it also can help raise much-needed funding to find better treatments and, hopefully someday a cure, for congenital heart defects" said William Foley, Executive Director, The Children's Heart Foundation.

The Children's Heart Foundation is the country's leading organization solely committed to congenital heart defect (CHD) research funding and is comprised of parents, family members and friends of those affected by a congenital heart defect. The goal of The Children's Heart Foundation is to increase awareness, support the recently diagnosed through educational materials and continue funding the most promising research to find better treatments.