Our story begins when we found out about Amila’s conditions while being 13 weeks pregnant. She was diagnosed with a “giant omphalocele”; which is a rare abdominal wall birth defect that caused her liver, stomach, spleen and intestines to form outside her body. A lot of doctors throughout my pregnancy have told me that I would not be able to carry to full term, potential loss while in the womb, how she wouldn’t come out breathing, or how she’ll probably come out weighting around 2lbs. Many have said she wouldn’t even have a chance of making it into this world. But I never gave up on Amila surely enough Amila was born crying, breathing, and weighing 4lbs 9oz. Her Omphalocele membrane had ruptured in the womb, which caused me to deliver at 33weeks and 3 days gestation. So, Amila’s organs were exposed to air and infections at birth. The first 3 weeks of life she had 4 surgeries to try and protect her organs; because of her membrane not there to protect her organs, they had to use the largest amount of A-cel sheet to hold and protect her organs. Her Omphalocele ended up being at least 6-7 inches away from her body. She was the most sweetest yet the most feistiest baby girl ever. Amila loved lullabies and when mommy read her books. She also loved when mommy and daddy held her. The last week before passing we got to hold our baby girl for the first time and it was the most rewarding and amazing experience. The feeling of holding my daughter for the first time was the most amazing experience. I’m being thankful we got to experience being parents for the first time to the most incredible little girl. She defied most odds and fought every single day she will forever be the light of our lives and forever loved and missed by so many. My Amila will forever be knower for her fight and strength we will always carry on her legacy, we love you so much Amila Isabel!
Thank you for taking the time to read our story and learn about our baby who will only live on in our hearts… forever. We would like to ask that you help the organization that has helped us and helps so many others in their times of need.
All donations made to this page are made in loving memory of our baby gone too soon and will be used towards the WNYPBN’s Program.
Due to the restrictions and safety precautions required by New York State because of the COVID-19 pandemic, the WNYPBN has to restructure our annual events. In response to this series of unfortunate circumstances, the creative team has come up with alternatives to our annual events, while still paying tribute to your beautiful babies and helping others who are in need of assistance after the loss of their babies, while keeping our community safe.
Please visit our Events tab for information about our upcoming 2022 Events and Fundraisers. We hope you are all able to participate in one or all of our events as we adapt to our “New Normal” and continue to stay in good health and be safe. We are grateful for your support!
Thank you, Emily, Christine, Sue, Kelly and our Event Volunteer Committee
