We Changed The World

I wrote this over the weekend and planned to post it tomorrow, but I’ve been really sick  and wanted to take a second to make sure this was posted since I will probably forget if I don’t do it now.  Please share if you know any HRH families who might have been along for our ride.

Nine years ago today  tomorrow, I did something that changed the world.  After seven months of searching in vain for information about my unborn, then newborn, son’s heart and trying to divine what kind of future he might have, if any at all, I did something about it.  I started a Yahoo Group (remember those?), and I trolled the Internet and found five women who had stories like mine.  Stephanie Rastelli, Monica Rafie, Heather Abner, Sharon Dunn, and Julie Thomas.  Two mothers of girls, three mothers of boys, and together we formed the very first forum of Hypoplastic Right Hearts.

The years rolled by, the surgeries piled up, one on top of another, across the globe, and our international membership climbed. from California to New South Wales, we had families everywhere.

Children died.  Too many children died.  In the earliest years, when we were still small, we turned off posts for a day when a child died.  When we moved to our new web site we couldn’t do that anymore.  So many children have died, but their memories were preserved, their families are loved.  We were joined by rare and precious adults born without right ventricles, and one of them (dearest Joanie) died too.

We fought like Hell, we mourned, we celebrated, we bonded, we grew.  We learned more than had ever been known by a group of parents before in the history of the world.  That’s pretty amazing when you think about it.  We became an official nonprofit organization.

In 2008, we united. . . Hearts United.  We had the first ever medical conference for parents of kids without right ventricles with a real life doctor to speak to us (thank you Dr. Breitbart) and a motivational speaker who was also an adult survivor (thank you Nick Zerwas). We couldn’t have done it without the fundraising prowess of Valerie Breder.  Then,  I handed over the reigns of my five year old third child to the amazing Dorothy Morrison and watched her blossom as the new and inspiring leader to our fold.

We met again in 2010 where the wonderful Weltins hosted Hearts Reunited in Houston.  They were so amazing, as was Dr. Charles Fraser and his staff who presented to our parents.  The kids bonded more, it was magical.  Steve Catoe was there with two other adult survivors to give us hope and inspiration.  We lost dear Steve later that year, but we had days to enjoy him in person.  He was larger than life. Then, the reigns switched hands to the astonishingly vibrant Kim Havelos, without whose husband Tommy, we would still be bursting at the seams of our old Yahoo group.  The Havelos family brought us through our transition to a real website, and keep us running.

Here we are in 2012, planning another Heart Reunited.  Watching our babies become big kids, watching the big kids be amazing adults, still and always mourning those we have lost, and reaching out to the new moms and dads who are becoming what we were – but better, because they have us.  We had no one, so we embraced each other.

I made that – I made it so that the people behind me on this pain train would not be alone.  I gave them a place, and then more than nine hundred people came to my party and it became our party. Tammy Lehmen and Jan Pelrine onboarded nearly all of those members.  I wish I could name all 900 and counting, but I cannot.  They know who they are.  We know what we’ve done. We changed the world together.  We’re not done yet!

So, in celebration of the birthday of my first nonprofit that I founded, please consider a birthday gift to the second nonprofit I launched.  The Children’s Heart Foundation, CO Chapter is my newer nonprofit baby inspired by my first.  The Congenital Heart Walk is on Sat. Aug. 25, nine years to the day that Liam had his second open-heart-surgery, and ten days into the infancy of HypoplasticRightHearts.org, my first agency of change in a world that really needed it.  Still changing the world, one step at a time.

Support Liam in his Heart Walk

If you are or were ever a part of Hypoplastic Right Hearts, please post a comment about what it’s meant to you.  I’d love to know!  Please share your memories.


13 thoughts on “We Changed The World

  1. Thank you for reminding me of how far we’ve come. You, my amazing son, me as a mom and us as a group of strong parents advocating for our children and helping each other. I remember when I joined. I was 35 weeks pregnant and had just found out my baby boy was going to be born very, very sick. They said he would need heart surgery before he was a week old. I was terrified and felt so alone. When I came home and took the internet seeking information, I found hypoplasticrighthearts on Yahoo Groups. By then you had close to 100 members. I was enveloped with care, and support and knowledge by the remarkable members. I’m proud of the work I’ve done with group and grateful to you and all the members who came before. Thank you Amanda!

  2. Amanda,

    We have indeed changed the world. It is tempting to say “you” as Lori and I are unfortunately no longer in your arena, but that’s not true. Lori played a huge part in the HRH forum and there were times when I think my CarePages updates helped some heart families. Certainly we have always felt a part of the wonderful community you’ve created: even when it was hard to be a part of it – Thank You!

    I thought I would take the opportunity of this post to say a few things to your readers from someone who has fought the fight (well) and still lost.

    It has been six years since our darling David passed away after horrible complications from the Fontan. It’s hard to believe that: it still feels so fresh. The hole left by his passing is immense, and we still feel it every day: often, every hour.

    To those of you who still have your special kiddos, I have only a few tough words:

    Don’t give up. I have seen families who decided it wasn’t worth it and stopped fighting. I’ve seen children literally waiting hours after having been discharged from the hospital for their parents to come get them, and I’ve seen the PCICU nurses hearts break as they raged about it.

    It is an affront to those of us who never gave up. Don’t give up.

    Don’t despair. I’ve heard great people, in their despair, doubt whether they did the right thing bringing their child into the world. Whether their child’s life will ever be meaningful. How they’ll tell them about a genetic anomaly. At times, I have been that person.

    Stop. As someone who has been to the other side of the grief you fear, just stop. You will do fine. And if you don’t, or if you do and it still all goes south, you will have plenty of time to be unhappy. Don’t do it now, while there’s a little one and the rest of your family who are there to be enjoyed.

    To the fathers: Work Less. Work enough to keep your insurance. Work enough to pay the bills and pay for whatever you and your wife consider the essentials. Then, stay home and enjoy your children (and your wife). Take your vacations. Before David’s Fontan, I spent 4 of the last 5 weeks on the road so that we could take time off for the surgery. I want every day I lost with him back.

    And for all of you, please remember something. The job you’re doing is the greatest thing you’ll do in your life. It’s hard to think that: I remember the all-night reflux vigils – the NG tube feedings – the 13 stays in the ICU for pleural effusions. I was miserable. Lori was miserable. We were always on call: always on alert, on 12 hours shifts like the nurses. I really have been there.

    But I was David Binko’s dad. And when I go back to visit the PCICU (which is hard), that’s how they still know me. It is the title I treasure the most. When I was David Binko’s dad, I was a much better person than I am now: a much GREATER person as well. I learned, I advocated, yes, I fought. I was doing something important and something hard.

    Having done that, I now find my job rather trivial. My meaningful contributions are rare and small. I find myself trying to find ways to get a bit of that greatness back.

    I am sorry for sounding preachy, but as I look back at Amanda’s post and our time with David, I wish someone had grabbed me and shook a bit: perhaps made me realize that with all my complaining about the tough hand I’d been dealt I was missing something rare and something important.

    I wish you all the best

    Bill

    1. Bill, your advice is good and true. You will always be David Binko’s dad- always. He may not be on our earth now, but you and Lori made him and he will not be unmade, and he will not be forgotten. His fight inspired us all, and your profound loss was felt around the world. You both changed the world and you changed it more today with your insights and your honestly. We all love your family and always, always will!

      Thank you for sharing this!
      Amanda

  3. Oh Amanda, I do remember.Those first months on the www,a fanatic search for information, and then there was you:-), and the rest of the group which was very small at that time, Liam was going for his Glenn, and our Elias still being a baby, a very sick baby, and those golden chatmoments-at the most odd hours due to the time difference-those moments who gave hope and courage and made me feel no longer alone in that strange world I suddenly found ourselves in-the world of lifethreathening disease…And Joanie, dear sweet Joanie*, who got her Fontan at the same time Elias got his, and we got her ‘get well soon Elias!’ card in the hospital shortly after we heard she past away…a card from heaven that really was.I was not a hero in english,(and I still ain’t) as Dutch is my motherlanguage, but I always felt understood from the very first time on the forum.Way to go Amanda, I am very proud knowing you! xxxkristien

  4. Hmmm – sounds like a school essay. “What has HRH meant to me?” It has meant friendship, sisterhood, bonding through a keyboard and then getting the chance to bond in real life. It has meant celebrations, happiness, empathy, grief and fear. HRH was my lifeline, my connection to the only people who truly understood what I was feeling. To people who could validate that I was not crazy. Maddy was a year old when I was invited to that first Yahoo group and instantly made best friends for life. Most importantly, HRH gave me hope. Hope that my baby could grow up and could live a “normal” life with her half-a-heart. Thank you, Amanda, for taking the initiative to give us this place!

  5. Before finding Hypoplastic Right Hearts, I was alone, angry and scared about my baby’s diagnosis, surgeries and future. Connecting with other heart parents online was like discovering buried treasure. I learned the realities of raising a heart kid from parents who’s kids were older than mine. It gave me a safe place to vocalize my grief. No one in my life understood what I was going through as a mother feeling guilty about grieving the loss of normal. Everyone in our group understood perfectly. HRH helped me find peace, balance and confidence in a good future for my son.

  6. Wow I am going to try to do this without crying. Ha not a chance that will happen. I dont think Ill ever forget Amanda finding me. Till I “met” my HRHS family I didnt know of anyone else whose child had a right sided heart defect. I had read of a few but never really had talked to many at that point and my daughter then was a few months old already and had already undergone 2 stages of her surgeries. I wasnt alone anymore. I wasnt walking the path by myself. Over the years I threw myself into the board and eventually due to personal reasons had to step way way back. Since then I have tried my hardest to get back in the swing. Honestly you never really get out of the swing of things. Its a daily routine to be part of the CHD world. But with the likes of facebook I have pretty much constant contact with my HRHS family. As Serena gets older we battle the line of how much involvement is too much for HER sanity. its not all about my sanity anymore. (wait do I have anyof that left). And yet still that draw to be part of it all is and will always be there. Through the years we grew together, we grew apart, we grew bigger, we grew smaller 😦 but one thing remained we are always there for eachother. Whether it be CHD related or just having a nasty crappy work day.

    So thank you HRH.ORG from the infancy of being a yahoo group (so funny how different it is now) to the amazing forums we have on the web now.

  7. Wow I remember the days on the Yahoo Group… seems so long ago… we also didn’t anyone until after Andrew’s Fontan and stroke! That group was such a blessing to us to also know others that were in our shoes too!! We are now 10 years post Fontan and life has changed and isn’t as “heart driven” but there’s always that other shoe that is waiting to drop!!! As we just sent our 1st born into the Army’s hands, our family is changing!! I pray that things “stay boring” around here (summer sure wasn’t) but always know that through the Yahoo Group, we’ve met some amazing moms, dads and fellow heart warriors that will never be forgotten!! I hope to finally meet all of you at Hearts United some day but until then, you are always in our “hearts”!! Love you all!!

  8. When my oldest son was born, no one I knew even had a home computer, much less Internet connections! I was lost. I didn’t know anyone with a sick baby. I didn’t even know kids were born and lived with severe heart defects. And, most importantly, I didn’t know I had a choice in medical care. I thought my local doctors would take care of us. I didn’t know that some hospitals have more experience, etc. I can’t help but wonder about the what ifs. When Clint died, I slammed the door on CHD and I wasn’t planning on opening that door again.

    I never, ever, EVER expected to hear those words again… “Your baby has a serious, complex, heart condition.” Yet, there I was, thirteen years later, hearing it all again. I immediately thought we would deliver another perfect-looking baby, put him through medical hell, and bury him. It was the only experience I knew.

    I was a member of the Baby Center Community and someone in my birth month group pointed me to the heart board. Tammy found me there and sent me to HRH.org. At HRH, I found a whole group of people wearing my shoes. What a Godsend! I can’t thank you enough for the support over the past six years. ♥ Much love and many more years of CHD advocacy blessings to you~

  9. Thank you so much Amanda for all your hard work and perseverance for our wonderful children. Thank you for providing us with a place to find each other in this world of HRHS! I don’t know how I would have made it through the first few years of JD’s life if not for the support of my fellow “heart moms.” Being able to reach out to people going through the same challenges saved me and pulled me out of the darkness. Thank you Amanda!! I am proud to “know” you! HUGS from way down south! 🙂

  10. Wow…I haven’t stayed connected via facebook, so I just loved reading comments from so many of our “old” members from over the years…so many memories and precious children.

    I know that through HRH, I finally understood my son’s heart. I learned what the various treatment options meant and where we were in a major wait-and-see line of treatment. I learned which doctors to truly value and, like Lisa, how different various hospitals might be on outlooks and treatments.

    I spent the first 3 years of my son’s life “alone” with his CHD. My dh and I handled the emotions of it differently, and not a single parent I knew could relate to where I was. HRH was the emotional connection and outlet that I desperately needed. It helped me turn from being a very isolated, lonely parent to being an involved parent with a cause.

    I have loved getting to know each and every one, and I want to know the “rest of the story” for every single family.

    Love you all,
    Sharon Dunn

  11. To put into words what HRH group has been for me is hard because there are so many. The support we get from our family and friends is amazing which we truly value and cherish them all. We are so blessed to have them behind us. But the support we get from our HRH Family is a blessing all on its own. Our HRH Family are people who truly do understand all the emotional ups and downs that come with having a child with CHD’s. And I don’t mean just the medical ups and downs I mean the every day life as well. I am in awe, inspired by, and love all of our HRH Family. We pull for each other, rejoice with each other, mourn with each other…we walk side by side with each other. This is journey we all did not see ourselves taking but it is a journey that is made easier by having HRH.

  12. Thanks so much for all the help and support you and the board gave me in the early days of Houston’s heart journey! I know that I am not around much anymore, but you guys were integral to setting us off on the right path in this journey!

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