Many of you may now be aware that my husband, Kurt, and I had a beautiful baby girl, and that she tragically passed away shortly after birth. What many of you may not know is the story of her journey.
On January 1, 2017, we received the wonderful news that we were going to be first-time parents. As you can imagine, we were beyond elated. During our routine 20-week ultrasound, the technician informed us that our baby was in fact a shy little girl. After some debate, we decided on the most befitting name for our tiny angel: Aoife. Sadly, this is where the journey begins to trend in a less traditional direction.
Despite an otherwise ideal physical evaluation, the technician also noted that she could not see all of the structures of Aoife’s heart. Our doctor suggested a second ultrasound at 24 weeks to give Aoife’s heart time to get a little bigger. But again, they still couldn’t see everything they needed to identify in order to give her a clean bill of health. So, we were referred to a specialist, and at 26 weeks, Aoife was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). In the simplest terms, the left side of Aoife’s heart failed to develop.
Due to the unique nature of Aoife’s heart condition, we were referred to a brilliant team of world-class pediatric heart specialists in St. Louis, MO, to begin the process of understanding what the future held for our daughter. Throughout the remaining weeks of pregnancy, we made multiple 8-hour round trip visits to St. Louis, spoke with pediatric cardiologists and surgeons, and researched all avenues of intervention, including experimental clinical trials. We wanted to make the best, most informed decision for our little girl’s treatment as we possibly could. Our hearts were broken when we discovered that there is no cure for her condition and that very early mortality is prevalent in patients.
However, we decided that we would not grieve while our little gift was still with us. We wanted Aoife to know only love and happiness, so we made a pact that we would celebrate every moment we had with her until the end. Fortunately, outside of the HLHS diagnosis, Aoife’s development in utero continued unencumbered until the big day arrived. I cannot express in words the joy we shared upon finally getting to meet our beautiful baby girl. She was more than we could have ever hoped for, and much more than we deserved. Aoife Rin Dillow was born on Thursday, August 24, and passed two days later on Saturday, August 26. Her short life will be celebrated Saturday, September 30, 2017.
While she may be gone, her memory persists in the hearts and minds of the family and friends she had touched throughout her short, yet unforgettable life. Unfortunately, so do the all of the expenses that we accrued along this tragic journey. We are faced with numerous out-of-pocket medical bills, travel expenses as well as loss of income due to not being able to work. If you are able, please contribute to 'Aoife’s Requiem Fund'; no donation is too small. Contributions of any amount will help immeasurably as we work through this difficult chapter of our lives.
Our most heartfelt thank you,
Amanda and Kurt Dillow
Thank you everyone for all of your thoughts and encouragement during this trying time.
You can also be an immense help by sharing 'Aoife’s Requiem Fund' with friends.
- Darren Cotter
- Wendy Masson
- David Rodriguez
- Kelly Schlinder
- Nicola and Regan Kampe
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