October Is Down Syndrome Awareness Month
October is Down Syndrome Awareness Month, a month dedicated to celebrate people with Down Syndrome and make people aware of their abilities and accomplishments. It’s not about celebrating disabilities, it’s about celebrating abilities. It's also about stepping up our effort to promote the acceptance and inclusion of individuals with Down Syndrome. DS continues to be the most common chromosomal disorder with about 6,000 babies born each year. In recent years, DS has become more common, and children with the disorder are living longer. Numbers and statistics give hard facts, but it doesn't give you a face or a story. With that said, instead of overloading you with educational information, I want to share a real story with you. Meet Zayda. She is a precious, smart and talented girl.
Zayda was born full-term at 40 weeks. She was 8lbs 10oz and was the biggest baby in the NICU. Her mom, Cyrstal, found out at 26 weeks that she had a complete AV canal which is a heart defect. She was told it was fixable once Zayda would be 7-9 months old. She was so thankful baby Zayda wouldn't have to be rushed away for immediate open-heart surgery. Crystal received all of this information when she was at a specialist's office for an ultrasound and echocardiogram of the baby. Crystal said when the specialist gave her the news of the abnormal echo she observed, she also informed her that half of all babies born with down syndrome have heart defects. That's when Crystal found out the probability of her baby girl having Trisomy 21 (Down Syndrome).
I was totally numb and scared but was determined to stay happy and focused on my pregnancy. I already loved my sweet baby and her diagnosis was not going to change the way I went about loving and protecting her. Because I did not get the Amniocentesis to determine for sure that she had trisomy of the 21st chromosome...there was still hope that she would be born "Typical" (normal) as in a baby with "typical" chromosomes. Parents are going to go through the motions of taking care of their child whether they have DS or not. It was easier going through it than looking back at it and wondering how in the world we did it all. - Crystal, Zada's mom
Zayda was breastfed but also had a G-tube (a tube inserted through the belly that brings nutrition directly to the stomach). Zayda had open heart surgery at 8 months and she had eye surgery with Dr. Piccione to correct her eye muscles.
Crystal was pregnant for Zayda's brother right away. They are 10 1/2 months apart. He is a typical child, meaning "typical chromosomes" and does not have Down Syndrome. Zayda and her brother are best friends and are just like any other siblings. Crystal said they are very active little stunt people who bounce on the bed and sofa and love to do leg extensions and handstands.
Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down Syndrome to lead fulfilling and productive lives. A local site that was very helpful to Crystal is Ella's Endeavor. Ella's Endeavor is a division of Upside Downs and its mission is to provide care baskets to new families in Louisiana who give birth to a baby born with Down syndrome. Ella's Endeavor facebook page is very helpful also.
Some basic facts about Down Syndrome:
- About 50% of all babies born with Down Syndrome are also born with a congenital heart defect.
- Compared to children without Down syndrome, children with Down syndrome are at higher risk for hearing loss, eye diseases, intestinal blockage, hip dislocation, thyroid disease, and anemia. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
- Down Syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
- Down Syndrome is the most commonly occurring chromosomal condition.
- Approximately one in every 700 babies in the United States is born with Down syndrome – about 6,000 each year.
- Life expectancy for people with Down Syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
- People with Down Syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways.
It’s not about celebrating disabilities, it’s about celebrating abilities. - NDSS Goodwill Ambassador, Chris Burke