Cornelia de Lange Syndrome

My high-risk pregnancy started when I was 11 weeks pregnant. We went for our first maternal fetal medicine (MFM) scan and were diagnosed with a condition called Hydrops fetalis, a condition in which the fetus is characterized by an accumulation of fluid, or edema, in at least two fetal compartments. Our fetus had fluid in [...]

Following my daughter Hannah’s birth, I was strongly advised by a doctor not to Google anything. Hannah had a plethora of medical issues, and there was speculation they were linked to a syndrome. Frustratingly, no other information was forthcoming – aside from the usual stuff we parents of children with additional needs often hear, such [...]

In a Facebook post from photographer Brandon Stanton’s wildly popular “Humans of New York” photo series, a man opened up about his Agenesis of the corpus callosum, a condition in which the structure that connects the two hemispheres of the brain is, in his case, absent. –> “I have Agenesis of the Corpus Callosum. Most people have [...]

Dear Cornelia de Lange Syndrome, I will never forget the day we first met. Before September 5, 2014, I never even knew that you existed… that is, until you made your presence known within my sweet, new baby girl. You chose her. And you know what? I’m glad you did. You see, when you chose [...]

In “The Godfather: Part II,” Michael Corleone shares some wise words gleaned from his father: “Keep your friends close but your enemies closer.” Well, I’m keeping you closer. Closer than I’ve ever kept anything before. I’d never even heard of you, Cornelia de Lange syndrome, until five years ago when my daughter, Hannah, (and you) [...]

If I had the opportunity to turn back time, to give myself hope when I didn’t think there was any left, I’d do it in the blink of an eye. I’d stop the clock right before the doctors took away our tiny, different bundle and tell myself she’s OK. Yes, she’s small for 32 weeks — 1 pound, [...]