Mama, Build Your Empire

[MBYE 32] Taylor Costello on Navigating Zellweger Syndrome, Transitioning from Hospital to Home, and Starting a Non-Profit

June 27, 2019


Taylor Costello is a mom to two angels in heaven (one miscarriage and one infant loss) and one baby on the way. Her daughter Lily was born on February 25th, 2018. She and her husband learned shortly after she was born that Lily would pass away before she was six months old due to a rare genetic condition. After spending 33 days in the NICU they came home to a massive amount of chaos. After some struggle, they finally found the tools they needed to get organized. This led to Taylor realizing there were other parents like them who were struggling with managing all of their children's home nursing supplies. Thus the beginning of Lily's List. Lily passed away on July 19th 2018 and Lily's List was officially born on October 1st 2018. Despite having no background in the non-profit industry, Taylor had studied psychology, and she had a deep passion to help other families like her. Six months in, the non-profit is thriving and she couldn't be more proud to share Lily's light in a world that is often very dark.


In this episode, we cover:

  • How Taylor and her husband Joey navigated understanding the impact of Zellweger’s syndrome on their daughter’s life
  • What it looked and felt like to transition home with a medically fragile baby after spending over a month in the NICU
  • How Taylor rediscovered purpose and passion through starting Lily’s List after her sweet baby girl passed


“Lily gave me a good life. She really solidified that I loved being a mom, so we’re really excited to have another child, but she also gave me a whole new meaning to life and it’s just amazing and I’m very thankful for that.”


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Taylor met her husband, Joey in high school and they began their marriage and her husband entered the marine core. They had no idea how a life of constant transition would actually prepare them for their adventure with raising children. Early on, Taylor and Joey suffered a miscarriage followed by months of infertility. Their decision to go public with infertility and IVF treatments was met with a lot of encouragement and solidarity from their community.

Though the pregnancy was normal in nature, it was obvious as soon as Lily was born, that something was not right. Lily was born blind, she had low tone, and refused to eat, among other telling signs. With the help of an expert geneticist, they were able to quickly diagnose Lily with Zellwegers Syndrome, which meant that she only had months to live. After life in the NICU, they made the transition home to a small apartment where Lily’s parents became nurses around the clock with the support of a lot of in-home health care professionals. It was exhausting and overwhelming, but the nurses provided Taylor and Joey so much emotional and practical support to weather these five months with Lily.

Losing a baby and so much purpose for each day was a lot more difficult than they ever imagined. Taylor had planned to throw herself back into work but was reminded that she had the chance to help other families who would face the same storm of caring for a child at home which led to the birth of Lily’s List. Perhaps the hardest news to hear after losing Lily was learning that Taylor and Joey’s combination of genes would most likely always result in the worst form of this disease. They opted to do IVF again in order to avoid this outcome and now are expecting another baby girl.

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