
My Sibling has Down Syndrome
When a mom learns that her baby has Down Syndrome she can often be overwhelmed with the thought of how this will impact other children in the family. She can sometimes feel guilt that her other children may be affected negatively because their sibling has Down Syndrome. However, Gabe shares with us just how a teen feels when his sibling has Down Syndrome.
My name is Gabe and I’m 17 years old. I am the third oldest of 10, and my youngest sibling has Down syndrome.
Her name is Lanie, she is one year old, and she’s the cutest thing I’ve ever seen.





appointment and what Down syndrome might look like. I looked through my Facebook friends ultrasound pictures to look at their babies nasal bones and their feet. After some google searches, I found out that Down syndrome causes sandal gap. It’s a gap between the big toe and the second toe. Back to Everest toes… that’s why it looked like her second toe was longer than her first. I got the call from my doctor when we were at a spa in Taos, New Mexico that the blood test came back and “confirmed what we were suspecting”. I went outside and called my husband and my parents and cried. I received a text later saying “it’s ok to mourn” this didn’t sit right and I knew from that point that I had to show everyone that this baby is still my perfect baby.
Up to that phone call, everyone was telling me they were praying for healing of our baby girl. That killed me. I felt like people were saying she isn’t perfect. Even after the blood test came back positive I had people tell me that the results could be wrong. Deep down I knew that she had Down Syndrome as soon as the doctor said he suspected it.
Our next appointment was on a Friday afternoon, for a fetal echocardiogram with a cardiologist. She told us that Everest not only had a hole in her heart but two holes and common valve which would require surgery at around 8-10 pounds or 4-6 months old. Also, she had a coarctation of the aorta which would require surgery at birth so I’d have to deliver Everest there. She said that Down syndrome causes low muscle tone and that could delay feeding so we could be in the nicu until the second surgery. Four to six months, three hours from home. After all of that news my husband, my parents and I were all stunned. We could barely talk to each other. Then the Maternal fetal medicine doctor came in, the only thing he told us was it looks like she doesn’t have a stomach…. again silence from everyone. He asked if we had any questions and left. The genetic counselor came in to chat with us and the mfm popped his head in again and said that the other doctors didn’t mention the missing stomach and left again.


and Hearing Association) Certified and trained in the SOS (Sequential Oral Sensory) Approach to Feeding. She received her Masters in Speech Language Pathology from Teacher’s College, Columbia University, and her Bachelors in Speech and Hearing Science from George Washington University. She currently works with the birth-5 population conducting evaluations & providing speech and feeding therapy in NYC. Molly provides therapy in the home as well as in a special needs preschool setting.
