Cornelia de Lange Syndrome, or CdLS, is a rare genetic condition that affects our sweet Emma. Genetically, it is not unlike Down Syndrome; nothing we did caused it, nothing could have prevented it. Individuals with CdLS are affected in a wide variety of ways. For Emma, she was born with a hiatal hernia resulting in her stomach being up behind her left lung. She also had a cleft palate. She will always be much smaller than her peers, and she certainly has some developmental delays. At this point, she is non-verbal. She has been tube-fed since birth, and struggles with reflux.
To learn more about this rare syndrome, click here to visit the CdLS foundation's website.