We found out in July that the baby that we were excitedly expecting to be born in December 2020 has a fatal condition. Since our time with her is going to be limited, we have already chosen her name: Celeste Louise DeMaio.
Celeste does not have kidneys. A baby’s kidneys produce the amniotic fluid, and the amniotic fluid is essential for the development of the lungs. This is known as bilateral renal agenesis (sometimes called Potter Syndrome or the Potter sequence) and is a fatal condition. If Celeste survives to birth, she will only live a few minutes to hours.
We were referred to multiple specialists at Holy Cross Hospital, at Children's National Medical Center, and at Johns Hopkins Hospital. As a result of additional testing, we learned that her heart is also not forming as would be needed for her to live on her own. This additional complication excludes us from pursuing even experimental interventions and erases any hope that might have lingered for Celeste to survive to experience the many things we dreamed of for her.
We wanted to set up this site as a way for us to share updates with those who want them and for you to share words of encouragement and support in a way that allows us to tap into them when we need them most. We also want a place to share the journey that is Celeste's life - in all it's joy and sorrow - before it comes to an end.