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How Do Siblings of a Child with Down syndrome feel?

Do you ever wonder how siblings of kids with Down syndrome feel? Sometimes I wonder how the girls have processed everything that has happened since Eli joined our family.  Sometimes we talk about it, but I found out how Daphne was feeling one day when I opened my computer.  I found the following essay and I couldn’t be more proud:

 March 15th, 2014 was the day that my life changed forever. For months and months my family, friends, teachers and many more people  stressed over this very moment. It was in July of 2013 when we found out my mom was pregnant, with her 4th child. Being the oldest I had gone through having siblings before, I thought I was prepared but nothing could prepare me for what was coming. Right after my 14th birthday in October my mom went for her 20 week ultrasound, and she knew something was wrong right away. The next day we got news that would change our lives forever. My baby brother had a plethora of serious health issues, he was missing a part of his heart, the crux, and he had something called “double bubble” also known as Duodenal Artesia, which pretty much means his intestines would need surgery soon after he was born, and to top it all off he has Down Syndrome.

After months of fearing the unknown, stress, a pre-term labor scare and preparation, the day was finally here. My parents drove to St. Josephs hospital early that morning. Soon after my grandparents came to pick my sisters and I up. I spent the whole day texting my dad “how many centimeters dilated is she?” and “what’s happening now?”. Before he was born I did some research on giving birth to a child with a heart defect and I knew what questions to ask.  We got to the hospital and waited in a cold, brightly lit hospital hallway. I sat there with my sisters, Gretta and Roxanne, my grandparents on both my mom and dads side, my dad’s two aunts and uncle, and our friend Nicki. Two big hickory brown wooden doors led into a long hallway, and in one of the rooms down the hall, there was my dad, and my mom was in labor. It seemed like forever until there was any news, but sadly it wasn’t good news. Elijah, my brother had gone into fetal distress and his heart couldn’t handle natural birth so they had to do an emergency C-section. The aroma of panic filled the room, my Auntie Sharon and Grandma Ann babbled nervously in the corner. Most of the adults tried to act positive as if I didn’t realize the severity of the situation. I sat on the cold white and blue freckled tiles, my youngest sister sat down next to me and asked if the baby was going to be okay. “Of course he is” I said, smiling, but really I didn’t know at all, but I couldn’t tell her that.  ”She’s so young theres no need to scare her” I thought, but in retrospect my grandparents thought the same thing about me.

We waited for what seemed like an eternity, my grandpa tried to get us to eat. I forced myself to eat a dry, mustard filled turkey sandwich. Then all of a sudden the doors swung open and two doctors came out pushing a large cart. There in a huge clear container lay a precious baby boy. His big grey eyes batted and tried to take in the clump of people surrounding him, taking photographs and goggling at this tiny little miracle. He was wearing a yellow little beanie and was wrapped up in a pale blue, white and rose pink blanket. There were too many tubes and machines to count and a thin long tube between his ruby red puckered lips. I had to push through my relatives to be able to get a good picture of him and when I did he looked me right in the eyes, I’ll never forget that moment. The whole room seemed like it was moving in slow motion. Then I was snapped back into reality when one of the woman holding his cart said, “I’m sorry but we have to take him down to the NICU now” and then rushed into an elevator.

My dad came out into the hallway right after and ushered my sisters and I in to another hallway which was closed off before. We walked down the hall silently then we turned right into a big room that reeked of sterilized surgical instruments and blood. My mom lay in a bed with a blue and white hospital gown on, and a blanket covering most of her. I hugged her and kissed her on the forehead, my sisters did the same. My dad had taken pictures of the doctors and my brother and my mom in the operating room and we got to look at the pictures. When he showed us a picture of my mom kissing my brother she said “I haven’t been able to hold him yet, they just let me kiss him before they took him to the NICU.” Although she was upset she let out a huge sigh of relief, because he was okay, we was alive, he was breathing, his heart was beating. He was so much healthier than we had prepared for. He was 4 pounds and 3 ounces, even though he was full term so that was the only unforeseen issue.
Later that day one of the doctors came out to talk to us. My sisters were both too young to be allowed in the NICU because flu season, but I was allowed to see him. So my dad and I walked down a long dark underground passageway which connected St. Josephs to CHOC. We got to the NICU and were guided into a small room with sinks on both sides. There we thoroughly washed our hands with warm water and non-scented soap, then after drying our hands and sanitizing them we were led into the NICU. It was a scary place, though they tried to make it as welcoming as they could. The sound of machines beeping, nurses and doctors rushing around and babies crying filled my ears. We were taken into a room where inside was Elijah, hooked up to an astronomical amount of wires and tubes. I reached for his tiny hand, it could’ve barely wrapped around my pinky finger. I totally fell in love with his flushed cheeks and beautiful eyes. I was unbelievably thankful and overjoyed that he was alive and even more perfect than I could’ve ever imagined.

This day was a huge event in my life. Not only did it encourage me to want to have a career in special education, it also lead me to become a more compassionate, caring, patient and understanding person. Watching my brother grow during these past 18 months has been so amazing. Although there’s so many doctors appointments, physical therapy sessions, and three surgeries, it’s all been worth it. Worth it because I get to see his beautiful smile and hear his laugh everyday. I’m so thankful for my brother and all the things his birth opened my eyes to.

By: Daphne Sullivan


  • I love this! I have 3 boys and my second son has Down syndrome. I often wonder what effect it will have on my other boys and I pray that it is positive. It’s so encouraging to hear stories like this. Also, I met you at the NDSC at love my new shirt!! :)

  • This brought tears. I have 3 special needs children and 2 typical and I am worried about the things my typical children may experience because of the needs of the others. Thank you!!!

  • Beautiful Daphne & Michelle. You are all warriors. I’m filled with tears of joy and heart ache—they are so often mingled. I love the way Daphne retells the day.


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