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Everyday is Down Syndrome Day


The 23rd was World Down Syndrome Day. I asked my husband if he knew we missed WDSD. He said “Every day here is Down Syndrome Day.  I chuckled, he was right. Our Ten year old daughter has Down Syndrome. When she was born we didn’t know she had Down Syndrome, it wasn’t until the second day of her life that we knew. She had been born at home. Her birth was beautiful and changed me as a person. I felt powerful and was amazed at what I was capable of. She was lovely to me. I didn’t notice anything that made her different. I only saw my beautiful baby looking up at me. My midwife and doula decided not to tell us till morning (see video below). I am glad they didn’t, because we were able to bond with her the whole evening after she was born. She was very healthy and showed no signs of distress in any way. I took her to my breast and she nursed right away. The next morning her coloring looked off to me she looked ruddy to me. I called my midwife. She came over and checked on our little one. She said we needed to go to the hospital to  make sure baby was ok.


At the hospital we discovered that she had polycythemia.

“Polycythemia is a condition in which there are too many red blood cells in the blood circulation. It is the opposite of anemia, which results from too few red blood cells in the blood circulation. Polycythemia is also called plethora when it causes a ruddy complexion.

Mild polycythemia may not cause problems. However, too many red blood cells can increase the blood volume or thicken the blood, making it harder to circulate through the blood system and to the organs. Babies can have difficulty breathing and their heart and blood vessels cannot compensate for the extra amount of blood. As the large numbers of cells begin to break down, a substance called bilirubin is produced. Increased bilirubin levels, called hyperbilirubinemia, can cause jaundice, a yellowing of the skin, eyes, and mucous membranes. Seizures can also occur with polycythemia.” 1

I was terrified as we sat in the emergency room watching the staff swarm around her. I knew my midwife wanted to say something but waited with us quietly. Our liaison was kind and explained what everyone was doing with our new baby but not why. Then we were ushered into our own private waiting room and then I fell apart. I wanted to wait with everyone else, I didn’t want my own waiting room! Our midwife stayed with us this whole time. Soon a lovely doctor with a Russian accent came in and told us that she had good news. She said they had done an echocardiogram on our baby girl and that she was “over the moon” excited to report that the baby’s heart was fine but for a small pin prick size hole in her heart that would heal on it’s own. I couldn’t understand why she would be over the moon about this and asked why this was good news. Then she said the words I will never forget. In her Russian accent.. “Well, Mizzes Kurby, we have reasons to believe your dawter has Down Seendrome.”

I was devastated. You know how in movies, when the protagonist finds out something or has an epiphany and the camera zooms in on him but the background zooms out? It was like that. In a weird way I wish I had video of me reacting to the news. I felt as if someone had shoved me off of a cliff. I remember turning to my husband, looking for support and him saying quite sincerely. “It’s okay.”
How the HELL could it be okay?! Our daughter had Down Syndrome. How could anything be okay again? I really didn’t know what that meant, I only knew it meant all my dreams all my hopes for her were dashed. And I mourned the baby I didn’t have that I had been expecting. I was terrified of what it would mean for her. What kind of life would she have? I didn’t know people who had Down Syndrome. Not really. I wondered if it was my fault somehow. I was lost. “It’s okay” he insisted. It was not. Not for me.


She spent the first 3 weeks of her life in the NICU at the local Children’s Hospital. Where she underwent tests and procedures “just in case”. I learned to fight to be with her or hold her, (it would be two years before Dr. Nils Bergman would come to Fresno, California to share the wonders of Kangaroo mother care with the good people of the Valley and the importance of skin to skin). I would sit in the hospital room topless holding her and when someone would walk in to tell me she needed to go back in her incubator, I would pretend to nurse her and they would run outright away. Small triumphs.
I was told I should stop trying to breast feed as she wouldn’t be able to, well no one told that to Uma. I felt I HAD to breastfeed her. I knew how important it was, that kids who breastfeed are intelligent and all that. I felt like it was the ONLY thing I could really do for her to give her a good head start. Breastfeeding her was very difficult and I struggled to do it for almost 6 months. Side note:We went on to breast feed for two and a half years! I wish I could go back and tell all the nurses who tried to dissuade me from trying, that it was so cruel to say those things to a mother in such a vulnerable place. I wanted to do something for my daughter only to be told I couldn’t, they weren’t helping me they were discouraging me.
One night my husband called me at the hospital after he got off work and asked how I was. I had been crying, watching the Olympics. He asked why I was crying. I said between sobs, “Because our baby will NEVER be an Olympic Ice Skater!”
Without missing a beat my husband said to me. “Neither will Ava.” Ava is our oldest. I had to laugh at this. Leave it to him to be practical and funny. Truly, what were the chances of her becoming an Olympian, especially since we don’t ever skate? In fact our daughter had a better chance of becoming any kind of Olympian over Ava. He took me out of my sadness spiral for a bit but it took 6 months for me to come to grips, to stop mourning. I hated myself the entire time I went through this. I felt guilty because I wished it away, I wished she had been born without it… I wish I had known then that it is NORMAL to feel these things. I forgive myself 100% for feeling this way. I only wish that someone would have come to me and said it was going to be okay. That life would be good. That things would be hard but being a parent is hard no matter what. I wish someone would have shared with me what life COULD look like with Down Syndrome.

My grandfather was the first person to put me on the right track. A WWII veteran and an all around bad ass, I had never seen him cry till he held Uma. I thought he was crying for all the reasons I had. But all he said when he looked up at me was…”Don’t let them take her away.” I had no idea what he meant. Was this the first sign of dementia? No. He explained to me that when he was young that any babies born “this way” were taken away never to be seen again (institutionalized). I promised him that would NEVER happen, and held her closer to me. He started me on a path of seeing her in a whole new light. I WANTED her. I NEEDED her close.


For World Down Syndrome day made a beautiful video called Dear Future Mom that I WISH I had seen instead of the experts that came and told me what to fear and look out for at the hospital.





















































For World Down Syndrome day I decide to make a video of my own. My hope is that a future mom will see it and have hope that life IS good and that things will be good…

My sister wrote about Uma years ago in a beautiful blog read it now.

For more info on WHY my midwife and doula decided NOT to tell me right away watch this video:

1.University of Rochester Health Encyclopedia

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