How we got here

Our story is similar to so many families who have children with Trisomy 18 or 13. We were 20 weeks pregnant when we received Stella's diagnosis. We did not feel supported at our local hospital and were asked to reconsider termination multiple times. We were told our child would live days at most and would likely not make it past 32 weeks gestation. After fighting to stay and spending weeks meeting with many doctors, we realized we would not be able to get a full team of doctors and nurses that not only supported our decision but would give the respectful and compassionate care our daughter would need. We spent weeks sending our daughter's records to other hospitals and talking to doctors and teams across the country.

Ultimately, we decided to move to the nearest trisomy-friendly hospital, Cincinnati Children's Hospital. Moving two hours away for fair care was one of the hardest parts of this journey. We had to pack up our life. We moved away from our support systems, our home, our jobs, and had to figure out childcare for our oldest daughter. It was complex and emotional and something no one should HAVE to do to receive the care their baby deserves..

After lots of traveling back and forth, we eventually moved to Cincinnati. Luckily, this move was the best decision we ever made. With the most supportive medical team you can imagine, we welcomed our daughter into the world and all the moments of fear that led us to that moment melted away. She was here, and she was beautiful and perfect in every way.

no moment was promised so we decided to always celebrate her life

We had a birthday cake made and sang her ‘Happy Birthday’ in the NICU the night she was born. We had her baptized by the same person who married us. Our whole family even met her before Chelsea. We took pictures, sang songs, watched our favorite movie with her. We even got her a one-month birthday cake that we snuck into the NICU to sing ‘Happy Birthday’ for the second time. No moment was promised and we decided to celebrate her life in any way we could. We fit a lifetime of memories into her 39 days on earth and when she left us, we knew we had loved her the best we possibly could. In that way, we had zero regrets. The following weeks, months and years, have been the hardest days of our life. The pain of losing a child never leaves you and no one should have to experience it. I want you to know you are not alone and peace can be found in the midst of pain.

Stella taught us how to find joy wherever we could, no matter how hard.

We didn't know if we would have hours, days, or years with her, but every moment was worth celebrating.

I know that during this time you and your family are facing difficulties. We have a dream that one day all children with Trisomy 18 and 13 will be treated with respect and dignity. We dream that research will continue to point us in the right direction on how to care for our kids. We hope doctors’ thinking will ultimately change the narrative of our children's lives. We desire that the medical community will one day treat our children with love, regardless of whether they live or not. That the families of our kids will receive the tender care they need during these times rather than strong-arming us into terminations. Whether our babies live or die, we love them.