Bodhi's HLHS Journey

We were just like any other couple, beyond excited to find out that we were expecting our first baby TOGETHER. Everything was going well aside from the heartburn, nausea, and vomiting. At approximately 20 weeks we went in for a routine anatomy scan of our baby, we were excited to find out what we were having! We were immediately told "BOY" and were beyond excited, but our excitement soon started to turn to confusion as we sat and wondered why this routine test was taking so long and why so many techs kept coming in and out of our room looking at images of his tiny little heart. Nothing, and I mean NOTHING could have prepared us for what we were about to hear....our OB told us that there was something very wrong with our little man's heart, our laughter, smiles, and complete joy turned to sadness, tears, and utter fear. Why!?!? Why is this happening?!? What did I do wrong!?! These are some of the questions that kept replaying in my mind. We spent our drive home in silence and tears. Our next visits were to Fargo, ND to see a Pediatric Cardiologist and Maternal Fetal Medicine doctor. We were told that the condition our son has is called HLHS, or Hypolastic Left Heart Syndrome; hypo meaning small or under and plastic meaning development. This condition means that somewhere early on during his development that the left side of his heart did not form properly and therefore will not function as it should. This condition without surgery means 100% fatality after a very short time. We sit here now at approximately 33 weeks gestation after having visited with more specialists in Rochester, MN with the complete knowledge that our son will undergo a series of open heart surgeries(the first being within the first week of his life) in order to have a chance of survival. We are both very proud people and have an incredibly difficult time asking for help, but we reach out now in hopes that people might find it in their hearts to help us. We will be having to relocate for some time in order to give our son a fighting chance, and that means a lot of extra travel, meals, lodging, etc which of course gets to be very expensive. We are also not trying to think morbidly, but there is a chance that our son will not survive in which case we will have funeral expenses. Our hearts are hurting in the knowledge that this could happen, but we would also like to be prepared if it does. We would like to say thank you for all the support we have received in the last couple months be it by text, phone call, Facebook, etc. We are truly blessed to have such an amazing support system. Love and blessings to you all! <3
  • Gem Van Leeuwen 
    • $210 
    • 69 mos
  • Audrina Majeski 
    • $50 
    • 69 mos
  • Amanda Torma 
    • $25 
    • 69 mos
  • Ellen Meier 
    • $5 
    • 69 mos
  • Anonymous 
    • $10 
    • 69 mos
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Organizer

Bianca D'Amato 
Organizer
Crookston, MN
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