Sunday, May 1, 2011

We Are Family - A Census of the Heartland

When Liam was first born, he was the only CHD baby in the NICU at Presbyterian St. Lukes.  All the other babies in that dark room were extremely premature.  There weren't many, and they were so small that when we sat down to hold Liam, the other children could not be seen behind the half walls of their incubators from across the room.  I can't remember seeing another parent there, even though one or both of us or one of Liam's grandparents was in that unit 18 hours a day. 

We never stopped to gawk at the other babies - that's totally against etiquette. The only glimpses we saw were as we entered the room and the itsy bitsy babies passed through our peripheral vision.  It wasn't until Liam was airlifted to Los Angeles at a week's age that we met our first heart family in person.  Jesse and Valerie's baby Desiree was born on my birthday, five days before Liam.  Desiree wasn't diagnosed with HLHS until she was two days old.  She had her Norwood the week before we arrived in LA.

Jesse was a born again Christian "sleeved" in tattoos.  Valerie was his second wife, and Desiree was their third child together and Valerie's first daughter.  They left their older children in East LA to drive 90 minutes through hellacious traffic to sit with their newborn daughter.

Our second real-life heart family friends were the Bohn's, whose son Colin was born the day of Liam's first open heart surgery.  Colin's parents Jen and Kevin are still our friends.  We're conspiring on getting our two boys to heart camp together in the coming years. In LA we also met Lynn, mom to Wyatt, who is my Facebook friend eight years later.

When it comes to Heart Family, I remember two things about the summer of 2003, 1). Starting Hypoplastic Right Hearts in response to the dearth of information about Liam's condition and 2). The sound of Valerie's voice on my answering machine when she called me after I mailed her a letter to tell me that Desiree hadn't made it to her Glenn. 

That sweet little baby with the tiny red bow in her hair was gone.  Those brave parents who were no different in their love for their child than Jim and I who prayed over Liam, lost their own battle.  I've never had a birthday since when I didn't think of the day Jesse and Valerie were beaming about bringing their daughter home or how short their time together was.

Desiree was the first personal loss I'd felt in my extended heart family.  I was so green then, but I still cry, eight years later, when our brothers and sisters in this fight have to concede the battle ground and bury their children.  When my friend Steve Catoe died last November, I was numb for days.  Sometimes, I can't believe that he's gone, even now.  I feel so blessed to have spent time with him last July in person.

I have never "gotten over" Desiree and I'll never "get over" Steve's death either.  I never stop feeling for the families whose paths diverge from my own.  By the grace of God alone am I still on the battle field for Liam's life, but I am not alone on that battlefield.  Every year 40,000 new babies are born with CHD, and every year 8,000 of them don't make it to their first birthday.  The parents left fighting are just like me - full of the same fears, same fights, same determination to learn what we can and be the best advocates for our kids.  There are 1.8 million CHD survivors in the US and that number grows each year.  We are legion.  We are not alone, yet we feel so alone far too often.

Facebook is amazing in connecting so many of us together.  It's taken what I started with Hypoplastic Right Hearts in 2003 and blown it sky high.  What are we going to do though, now that we're connecting?  How is this family reunion of epic proportion going to advance beyond the necessary emotional support to the advocacy and action necessary to make the research and medical services work for our kids?  What's next, heart family?  Where are we going, and where do we want to go?

I wrote Half Heart, Whole Life, not as catharsis.  Lord knows I have no problem telling anyone and every one about our journey.  Through the years, our  Care Page captured most of what I needed to say.  I wrote the book simply because it was unwritten.  I wrote Half Heart, Whole Life because the world is far too comfortable imagining that babies don't die or that heart disease is for old people.  I wrote it because every time I mention that Liam's had 12 heart surgeries, the first thing non-heart parents say is, "I'm so sorry."  I'm not sorry - I'm glad he's survived those surgeries.  I'm sorry for Liam that he needed them, but I'm never sorry to still be in the fight, and that's something people beyond our heart family don't understand.  I'm trying to change that.

I wrote Half Heart, Whole Life because as much as our heart family is growing and growing together, the rest of the world needs to know how many of us there are and how hard we fight, and we need to work smarter and harder TOGETHER.  It's a rallying cry to share and bond and move forward as a community.  I write about the Heartland in the book, and that's the place where we were once marginalized as parents of children with this chronic and life-threatening condition.  I want it to be a place we celebrate for the strength it holds, a strength it draws from each and every segment of our larger heart family.

Alone we are terrified, together we are unstoppable.  My book is simply more glue to bind us.  Heart Family - post your links to your blogs, your stories, your carepages, your support groups here.  Speak up and be counted.  Just post your child's name or your name if you're a warrior,  and BE COUNTED.  We count.  Speak up and make the world listen.  We are family! 

19 comments:

  1. We'll be counted!!! Of course!

    Caroline McKaskle, HRHS

    Love ya,
    Stephanie, Noah and Caroline

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  2. Awesome blog post! Count us in!

    London Mobley II, 11 on July 28th, Hypoplastic Left Heart Syndrome, 4 open-heart surgeries

    Love,
    Becki, London's mom & mom to Elizabeth(16) & Catherine(14), both Heart-Healthy.

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  3. My name is Melonie and I am a heart Mom. My daughter Analicia was born 21 years ago this month. Hard to imagine 21 years ago this scared 18 year old girl would be faced with the enormous job of raising a child with a congenital heart defect. There have been many tears of joy and of pain along this journey. I have been told countless times that she would probably not make it through the night. I have watched her being wheeled off to open heart surgery three times in her life and been taken to one too many family rooms to be told news that I was never ready to hear. But even through all the scares and heartache she is still here. By the grace of God and doctors that wouldn't give up she is still here. With the love and help from family and friends we have made it this far and have hope that she will survive. She is almost 21. Such a milestone. We have celebrated many. She was married last year. A day I thought I would never see but I did. So many children don't make it past their first birthday which I don't understand. Why did she make it but they didn't? I have survivor mom's guilt. I have bonded with so many moms and dads over the years through our online community and I couldn't have made it through these past years without them. It's so important for parents to know they are not alone. 21 years ago all I had were doctors and medical libraries to help me, none of which made any sense to a scared teenage mother. But thankfully now there is help and hope out there and I thank God for my extended heart family. So I am standing up to be counted today. My daughter Analicia, age 20, Pulmonary Atresia with Intact Ventricular Septum, Hypoplastic Right Heart Syndrome, Coronary Sinuoids. Post BT Shunt, Glenn Shunt and Fontan heart surgeries. I am Melonie, her Mom.

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  4. Aiden 21 months
    HRHS, Tricuspid Atresia, ASD, VSD, and pulmonary stenosis.
    2 heart surgeries
    He is doing great, full of life and energy
    <3 Kristina & Aiden

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  5. Olivia, July 29, 2004. HRHS!

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  6. Barbara CharlesMay 1, 2011 at 6:08 PM

    Barbara - Mom to CHD kids Olivia (12) ASD - unrepaired and Madalyn (8 - 9 on Friday!) HRHS - Triuspid Atresia and will be 6 years post-Fontan in June.
    Carepage name: MaddyJayne

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  7. Laurel - Mom to Zoe (6) HRHS, Pulmonary Atresia and Ebsteins Anomaly. 3 years post-Fontan this March. She's doing fabulous!

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  8. I'm not talking to you till you send Liam to Heart Camp, I've even offered to let you stay here so you can be close (and we can spoil Moira silly). August 29- Sept. 2..........

    Thanks for remembering us. Also, when people hear that Colin has had 3 open heart surgeries and they say "I'm sorry", I tell them without the surgeries he wouldn't be here, it quiets them for a bit.

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  9. Man - he's in his second week of school by the 29th!

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  10. Jessica Marie Jensen June 3, 1988 - Oct 4, 2010
    ToF, pulmonary atresia, pulmoary stenosis all the way from lung to lung & NO connection to the heart at all, collaterals from aorta to lungs, extra digits, DiGeorge, 5 heart surgeries, 2 strokes, countletss procedures & caths & hospitalizations, several other surgeries, she was never repaired so she lived with 02 and in a motorized wheelchair for about 17 yrs, developed ichemia of the bowels which caused her extreme pain for many years and which ultimately led to her death. Due to the strokes, lack of oxygen and the DiGeorge... Jessica never developed beyond the level of 7 - 8 yr old. Always bright-eyed, innocent and loved everyone. She was generous, drawing pictures or stringing bracelets and necklaces for everyone. She loved spending time with family and friends. The week before she died she said, "This is the life! I have a family who loves me and I love them too". She knew she was dying but still loved life and knew there was a heaven. Even through all she went through she fought hard and made the best of an extremely difficult life. She is my hero.

    http://fancydancy.blogspot.com/
    http://www.angelfire.com/oh4/jensenland/

    Like you, I had never heard of CHD until Jessica was diagnosed when she was 2 weeks old and in CHF so bad that she almost didn't make it through the night. Later she suffered strokes which left us starting from square one: Her first stroke (at age 5 months) was in the speech area of her brain and made it extremely difficult for her to learn to speak and her right side was very weak. Through physical therapy, occupational therapy, learning sigh language, speech therapy and many tears and prayers she recovered and learned to talk! Her 2nd stroke (at age 3 yrs old) left her blind and left side (which was formerly her strong side) paralyzed. Her speech had also regressed. In fact, she shouldn't have made it through that surgery since her shunt (that carried blood from the aorta to the pulmonary artery) she hemorrhaged for several days, had a blood infection and was having seizures again. She was not expected to make it at all... then when she woke up she was blind and paralyzed. Again God blessed us because after a lot of prayers, OT, PT and Speech she regained almost all that was lost... she had to wear glasses after that but she could see!

    She was not expected to make it through childhood due to the severity of her CHD and the lack of pulmonary arteries and PA branches. We were so blessed to have her with us as long as we did. She loved her life - - nobody could have told her that it wasn't worth living. So thank you for allowing us to stand up and be counted. SHE mattered just as every CHD child matters... as well as my other 3 children matter.

    (((Hugs)))
    Nancy

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  11. Amanda & Andy - parents to Janelle.
    Janelle is 3 years old with DILV, TGA, AS and CoA. She was diagnosed with a single ventricle during my boy or girl ultrasound. Norwood at 1 week old, Glenn at 4 months old, 2nd cath scheduled for this morning, Fontan scheduled for May 16, 2011. She is Dr Knott-Craig's patient.
    http://janellemakenna.blogspot.com/

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  12. Count among the brave ones my littlest, Jillian, born 4/17/06 with Tricuspid Atresia w/multiple VSDs and PHACE syndrome.

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  13. My name is Kim Baker mom to Bowen Baker who has HLHS, DORV, DTGA, and PS. He just had his Fontan on APRil 14th, and before we left for surgery I read Chapter 1 of your book. You of course warned me not to, but I had to satisfy my curiousity. I had no idea that anything like that could happen, but I can tell you that it made me appreciate our 4 day stay so much more than I probably would have! I agree with you Amanda, it's hard not to get close to people and then hear of their child's passing. I still cry over some of the children we've lost since we started our journey. I also have made some of the best friends I have ever had, and they are angel parents. I've always said that if had my way, that all the heart families would have their very own town/ city where we could all be close and be there fro one another when needed. I said this at a time where i was tired of dealing with the people who were "sorry". The people who just didn't "get it" and that probably never would! I have learned that unless directly affected themselves, there is little hope that they will understand, but I still try! Even now that we are done with the series of 3 surgeries, outsiders and even family thinks that Bowen is "fine" or my pesonal pet peeve "fixed". I will tell you that seeing this on your blog made my heart smile as it feels so good to know that I am not alone in the way I feel! You are an amazing woman Amanda, and I know that God will bless you for all your hard work and dedication to the "heart family" and CHD community! Please continue to share your brilliant thoughts as I am intrigued by your beautiful style of writing! Heart Hugs to you and Liam!
    ~Kim Baker
    Group Administrator for Heart Mommies On A Mission (HMOM)

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  14. I'm a 25 year old woman with multiple CHD's.I have DORV,VSD's and Pulmonary Stenosis.I've had 5 OHS with the last one being nearly six year ago.

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  15. Hi I am mum to Lachlan. He is 15 months and has Pulmonary Artesia, VSD and MAPCA's

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  16. We want to be counted!

    1. Clint born in 1992 with D-TGA, TA, CoA, ASD, VSD, HRHS. CoA repair and pulmonary banding at one week old. Complete heart block at 3 weeks. Pacemaker placement; band adjustment; 2nd pacemaker placement; pneumonia, staph, sepsis. Passed away at 9 weeks old in Jan 1993.

    2. Eli born in 2005 with L-TGA, DORV, PS and SubPS, ASD, VSD, Tricuspid Regurgitation (Ebstein-like), Hypoplastic right-sided left ventricle, WPW, plus overriding aorta and right ventricular hypertrophy. No surgeries until age 3--1 1/2 ventricle 'repair'. Five years old and doing well. Next 6 month card visit is this week!

    Lisa Schaffer

    Member of:
    HRH (Lisa Schaffer)
    BCC Heart Problems (Lisa in TN)
    L-TGA Yahoo group (Lisa in TN)
    & too many to list FB groups and pages related to CHD (Lisa Barham Schaffer)

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  17. We are another one! <3 Amanda, thanks for writing this book to get the word out for our kids!

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  18. Count us in! Jen, mom to Gracie who will be three this summer. Pulmonary Atresia IVS and awaiting the Fontan.

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