Personal Stories

Oona

Oona

Our journey started at our 20 week ultrasound where we were told our daughter had CDH. We were absolutely devastated.  We immediately did some research and learned all we could about CDH.  We were trying to save money knowing that it would be tight financially...

Alanna

Alanna

Alanna has been through a lot for a 2½-year-old.  She became a Boston Children’s patient at 22 weeks in utero and was born prematurely at 35 weeks with omphalocele, a birth defect of the abdominal wall. Under the care of Dr. Terry Buchmiller, she underwent surgery at...

Anastasia

Anastasia

My name is Natalie Eyler and my daughter, Anastasia, was born with CDH.She turns five in March and shows time and again what a survivor she is. One of her ongoing troubles is with eating. She has been fed via G-tube since she was three months old. Fortunately, there...

Nico’s Story

Nico’s Story

We live on Martha’s Vineyard, Mass and found out our son, Nico, had right-sided CDH at our 20 week anatomy scan. The rural hospital we live near didn’t want me to deliver there due to my daughter being born prematurely (33 weeks) and to the special needs of Nico at...

Leila’s Journey With CDH

Leila’s Journey With CDH

Today I would like to tell you a little about my daughter's journey with CDH and the support from the Incredibly Teddy Foundation. After years of trying to conceive my 2nd child, with several miscarriages and 2 rounds of IVF, I received the amazing news that I was...

Share Your Story

It’s important for families affected by CDH to know that they are not alone. Sharing a story about your personal experiences can help in your own journey as well as provide encouragement and support to others with similar experiences.