A Trisomy 18 Warrior
We learned about Ivy’s diagnosis when I was about 23 weeks pregnant. We were told that her condition, Edwards Syndrome (Trisomy 18), was fatal and that she would likely pass away at birth—if not before. We decided to, in the words of our genetic counselor, “prepare for the worst, but hope for the best.”
After Ivy was born, she spent 5 days in the NICU. During that time, we were told her seeming decline, marked by increased spells of not breathing, was “the beginning of the end.” Rather than spend what we expected to be her final days surrounded by tubes and wires, we made the decision to bring her home on hospice care.
It was then that Ivy showed us she would be the author of her own story—and that other people’s expectations didn’t matter. The apnea spells stopped, and Ivy began her journey of proving her doctors wrong.
We are fortunate to now have a team of doctors who see Ivy, not just her diagnosis. In all things, we let Ivy lead the way.
She has undergone chemotherapy and major liver surgery. She has survived respiratory illnesses that could have taken a very different turn due to her pulmonary hypertension. Through it all, Ivy continues to amaze us.
She is sassy, stubborn, and the queen of giving side-eye. She has trained her family, friends, and therapists to interpret her every look and sound so we can meet her needs. She has the best smile we’ve ever seen and loves tickles, being read to, and smoochy kisses.
As we often say, it’s Ivy’s world—we’re just living in it. And we are so grateful to do so.
Available in: Footie, Girls Luxe Lounge, Leggy Romper, Women's Luxe Lounge
