Thursday, September 30, 2010

Rethinking the day that changed everything

October 1, 2010

Dear Dr. Rotmensch

One year ago today, my life was forever changed. To you, I’m sure it was just another ordinary day. Not one that particularly stands out to you. Just another day where you see a prenatal patient and have to deliver news that will stun her into silence, punctuated only by the tears flowing down her face. I’m sure to you it was simply another day, another part of your job that you probably don’t particularly enjoy. But to me, it was everything. It was the day I went from being a normal everyday mom to a “heart mom.” The moments of the morning of October 1, 2009 will forever be etched in my memory: the casual laughter between my mother (my husband had to work so couldn’t attend – thank God my mom was able to), myself and the ultrasound technician, the mood shifting abruptly when you walked in with two colleagues (by the way, it’s never a good sign when you walk in with colleagues), the hushed tones with which you spoke with them as you went over every millimeter of our baby’s heart and then your somber expression, the murmured “I’m sorry’s” of your colleagues as you explained that our baby had Hypoplastic Left Heart Syndrome, me asking “am I going to lose another baby this year?” and you softly responding “that’s a really tough question to answer.”

That was just the first of many appointments with you, almost every one of which included the terms “termination,” “fetal demise,” “heart failure,” and “bad heart,” until my husband finally told you to put something in the file that we no longer wanted to discuss termination. I don’t fault you for bringing it up, we know that you were just doing your job and felt as though we needed to understand the seriousness of our child’s condition and our “options,” but we also wanted to make it clear that termination was never an option we would have considered; that simply wasn’t our choice to make.

On October 1, 2009, I was scared, facing an extraordinarily difficult future, one in which you gave me very little hope for my child or our family. On February 16, 2010, I gave birth to Bodie Isaac Bennett, the bravest little fighter I have ever met. And now on October 1, 2010, I stand in a vastly different place. I stand in a place of hope, of excitement for my son’s future, of such unbelievable gratitude that I chose life for my child. I write to you so that you can know that an HLHS diagnosis can have hope.

Yes, HLHS is scary. Yes, it is a horrible diagnosis. And it takes the lives of far too many sweet, innocent babies every year. But for every family that I know who has lost a precious child, another family has a child that is thriving. Understand that – my son is not merely surviving. He is thriving. He had an incredibly rough start to life, one that has included three open heart surgeries, two cardiac catheterizations, a pacemaker and the majority of the first 5 months of his life spent in the hospital battling various infections that actually had little to do with his heart. I would take all of this from my son in a heartbeat if I could, but I can’t. And despite all of that, his terribly rough start? Now, he is absolutely thriving. He is a happy, bubbly and sweet 7 month old little boy with at least 2 years before his last “planned” open heart surgery. He smiles all the time, blows raspberries, laughs at his big sister, rolls over, chews his toes, puts anything and everything in his mouth, and pretty much does everything else a heart healthy 7 month old baby does. You would never know from looking at him that there is anything different about him, unless we happen to let you see his scar. I am including pictures so that you can see just how well he’s doing.

I am also including pictures of other HLHS adults (!) and children that, like Bodie, are absolutely thriving.

These beautiful women were truly pioneers in the field, having their surgeries back when very few babies survived. I am so grateful that their parents were willing to undergo risky experimental surgery, since it’s because of brave parents like theirs that my son was able to undergo surgeries with survival rates upwards of 90%. By the way, all three women are doing extremely well (both Jeni and Brooke are married), none have needed heart transplants, and the oldest living survivor with HLHS, Bryan, is 32 years old!

Jeni Busta, 24 years old

Brooke Fescenmeyer, 25 years old

Heather Fuller, 28 years old

And these children are the next generation of HLHS fighters, the ones who, like Bodie, are literally writing history everyday.

Addison, 22 months (post-Glenn)

Townsend, 21 months (post-Fontan)

Grace, 20 months (post-Glenn)

Aly Jean, 15 months (post-Hemi-Fontan)

Travis, 10 months (post-Norwood and Shunt Revision)

Jake, 6 months (post-Glenn)

Olivia, 6 months (post-Glenn)

Zoe, 5 months (post-Hemi-Fontan)

I wrote you this letter because I want you to understand that many, many, many children are living with HLHS and thriving. I know you don’t get to see them in your practice, because you only see the babies before they’re born – not once they’ve been through surgery later. Years ago, you are right, there was literally no hope for these children. But we don’t live in that world anymore. We live in a world where medical advances are making life possible, one heartbeat at a time, for these children. And we, as parents to these bravehearts, are abundantly blessed. And I want you to understand that. So that the next time you have a pregnant woman sitting in front of you, tears streaming down her face, you will remember this letter and that that there can be hope for these children. So that another woman, and another family, won’t have to unnecessarily be put through months and months of heartache thinking there really is no hope. And maybe, just maybe, amidst the language of “termination,” “fetal demise,” “heart failure,” and “bad heart,” you will also include words like “hope” and “thrive.” And maybe, just maybe, another braveheart, and another heart mom, will be born.

Thank you,
Amy (and Dusk, Sierra and (most of all) Bodie) Bennett

Yes, I did mail this letter to my Perinatologist.
And a huge thank-you to the HLHS survivors and moms who helped me out with this project. :-)


  1. I applaud you, Amy. Such a perfectly written and heartfelt letter. I'm going to share with everyone I know. Thanks again for taking the time to put this together!

    Big heart hugs,
    Zoe's proud mommy

  2. Amy,

    This letter is amazing. So proud of you for speaking up for all of us. If more doctors could see our babies smiles and hear their stories maybe they would not be so quick to recommend termination.

    Thank you for letting us be a part of this.

    Heart Hugs
    Jacob's Mommy

  3. What a wonderful letter; so heartfelt & true. I hope your Doctor really read it and took it to heart! Did you receive a response - would be interesting to hear what it was. I am a Mum to heart healthy children blissfully unaware of this world till I came to know of Kathy & Jake's journey. Now I stand in awe of all of you - you have all taught me one very important lesson - savour every single moment with your child, the good and the bad, as every single one is a gift from God. Hold all of you in my prayers & thoughts daily. Cherilynn (RSA)

  4. Beautifully written letter; now I need to write mine. We passed our anniversary in August, and not many days go by that I don't think about the very things you express so poignantyly. What if I had been enveloped by the grim prognosis I was given? It is too horrible even to imagine. To share with the medical community stories of the survivors, the "thrivers", that is work well done. Thank you.

    Hannah, Mom to Cora (HLHS)

  5. I love your letter. I should probably sit down and write one too. I don't see the cardiologist who followed me during my pregnancy anymore, but I am pretty sure he would like to know how Hope is doing. Thank you for the inspiration.

  6. Beautiful letter. Thank you for writing this and I look forward to hearing about Bodie for a long, long time.

    Jeff Crozier, father of Reece, 3 month old HLHS baby.

  7. Amy
    Every time I read your letter it makes me so angry that you had to go through all of that with your doctors. How aggravating (for lack of a better word) that in your most vulnerable moments your medical staff took out a ray of hope from your future. Then I sit back and sort of chuckle because Bodie SHOWED THEM! All our little heart warriors stick their tongues out at doctors that say: "can't, won't, unlikely". It's just not in these kids' vocabulary. How can we not be proud of that as parents? Thank you for this letter

  8. I love it. I thought the oldest survivor was 27. I'm amazed that he is actually 32! There is such hope for our little ones!

  9. I just LOVE this letter!! Great Job Amy!! Great Job!!

  10. It couldn't have been better! Beautiful.
    ~Kimberly B.

  11. Awesome letter... I think we all have the same type of story to tell. You can write Owen on your list of HLHS survivors... at 2 1/2, post glenn, we were told at 10 months that he would surely need a heart transplant SOON. It's been almost two years since that date and we are now looking towards the possibility of the Fontan. We had HOPE and the blessings continue on.. it's amazing!! I'll add Bodie to my heart blog roll!! :)

    Glad to meet you. PS Came over through Zoe's blog.

  12. God Bless You for choosing LIFE! Bodie is gonna achieve great miracles throughout his life and continue writing history as you said. I love you and your family... especially my Bodie.

    It is great to see pictures of the beautiful children we have been praying for.

    God bless you all.


    Nairi, Michael and kids

  13. Wow. what an amazing letter and story. I know you don't know me but my name is Amanda Stewart I have a little boy with hlhs. He is turning 1 next week. I just look back at a year ago in amaziment of what warriors these little babies are. I have not met many moms of hlhs babies, so it does my heart good to see all these pictures of all these wonderful kids. thank you for sharing your story with me:)
    Amanda Stewart

  14. The letter turned out great Amy! Curious to see if you get a response.......

  15. Love it!! I could (and should) write a similar letter to the Perinatologist that gave me our diagnosis!

  16. I am so glad you mailed that letter. We got the same "advice" from our perinatologist too. It was heart breaking and yet "fixable" wasn't in there vocab. Thank you from The Payne Family. We got our horrible news September 25th, just a little over a year ago and on that day I refelcted on the days events from a year earlier and I would have never thought I would be here with a thriving 7 month old by the way the perinatologist spoke to us. P.S. We are so glad Bodie is doing so well. Kisses to you all. Jean-Marie... Liam's Mom

  17. thanks for posting this, Amy:) - s. wagner

  18. God Bless You my Bodie. Sleep with angels tonight. Love: Nairi and family

  19. My daughter is going to have her second surgery and I am so scared she is a fighter and I have faith in Allah (God) that she will make in Allahs willing