For Charli Mae, Forever and a Day
Today marks five years since what should have been one of the happiest days of our lives. The due date. The day we were supposed to bring new life into the world.
A little over four months earlier, our world, or the world as we once knew, came to a blistering halt. On December 17th, 2020, after a worrying 20-week scan two days prior, we were informed our daughter had a severe case of Hypoplastic Left Heart Syndrome. The experts at Northwestern Hospital in Chicago gave us several options that all included the word “if”.
“If” we went full term, our daughter would be put on life support and “if” she survived the first seven days she would have the first of three open heart surgeries to prolong her young life. “If” that was not an option for us, and “if” we went full term, we could put her in palliative care. Lastly “if” neither was an option for us we could terminate the pregnancy.
The one thing that we were told with certainty was that the first two choices would result in our daughter Charli Mae turning blue at birth due to her diagnosis and not having enough oxygen circulating her tiny body. We ultimately did not want our beautiful baby girl to experience any pain and decided to carry the heartache for the rest of our lives and on December 22nd, 2020, she was gone.
Over five years on and the pain of a difficult choice and the pain of losing our first daughter hasn’t gone away. You hear a lot that it gets easier with time, when in actuality you learn to live with it and hide it daily as the days, months and years go by.
But that pain is always there. Waking up, Charli is the first thing we think about and going to sleep, she is the last thing on our mind (although it’s been well over five years since either of us knew what a good sleep felt like).
During the 5 days between deciding and losing Charli, we had some incredibly dark moments such as calling a suicide hotline for someone to talk to as bereavement therapists and social care workers from the hospital operated on a Monday-Friday schedule.
We also had some bright moments; in the midst of all the heartbreak I had a chance to feel Charli kick for the first time later that same day and managed a smile even at the toughest time.
We also started planning some action and began to organize the first 100k for Charli Mae which would take place from April 4th – May 4th (Charli’s due date). It would also fittingly turn out to be TFMR Awareness Day, a day to acknowledge terminating for medical reasons.
Since 2021 over $43,000 has been raised in Charli’s name via the 100k challenge, charity soccer games, her Nana jumping out of a plane and many more fundraisers. On December 22nd, 2025, the Charli Mae Foundation went live to officially manage how funds are raised and distributed. Money raised has helped support baby loss charities across the Atlantic Ocean as well as help fund a bereavement room at a hospital in Naperville. It has also supported the annual SHARE Walk to Remember in Naperville that happens every October.
These fundraisers, and this foundation are our way of parenting Charli even if she can’t be here with us physically every day. These are ways that we can continue to share her achievements with the world in the same way we acknowledge the milestones of her little sister who was born in 2022.
Today on May 4th, 2026, we wish you were here to celebrate with us in person, but even though you are not we will make sure that the world continues to know about you and you have the kind of impact on the world every parent wants for their children.
Charli Mae, we love you forever and a day.
