The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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Presley Monroe
Presley Monroe

I am 21 years old and my daughter was born with Down syndrome. I found out when I was 24 weeks that she would have Down syndrome just by three markers on the ultrasound. I was told from day one to abort her or consider adoption. I was in total shock when I heard what the genetic doctor was telling me, why in the world would I want to give up such a miracle? I then considered going to a cardiologist and he found that she had a heart defect and also found that she had non immune hydrops. He then told me that there could be a big possibility that she would not make it. She was born exactly two months early on November 1st 2009 weighing in 4 pounds 2 ounces and 16 inches long. She was immediately taken into the NICU at Miami Valley Hospital where she was born and was on a breathing machine called an oscillator, they then discovered another problem with her heart which was a kink in her coarc ducts. It took us 3 weeks to get the hydrops fluid off her in order for her to have her surgery. I finally got to hold her for approximately 5 1/2 seconds after her being three weeks old. On Thanksgiving Day she was transported to Cincinnati Children's Hospital for bowel issues, they tested her for biliary atresia and Hirschsprung's disease and they both came back negative but she then started using the restroom on her own. On December 8th she had her first heart surgery to repair her coarc ducts and she recovered with flying colors. She then was able to be put on wall oxygen and then we discovered she had chronic lung disease. She has never had anything by mouth and is currently taking feeds through a GJ tube. She was released on February 12th and was home until April 19th when she had to go in for her big heart repair. They gave her a 1% chance of living through it. During the 8 hour wait the doctor came out to tell us about the surgery and said she was having some trouble coming off of the bypass machine and had to be put back on it. After she finally came off of it they hooked her up to a pacemaker to regulate her pressures, she was on several medications and was in the hospital for almost another month, she then started having withdrawal from her medications and had to be hospitalized even longer. If it weren't for the Ronald McDonald House in Cincinnati I don't know what my family would have done. We thank them so much. Presley is now home and is still on oxygen and on GJ tube feeds. She is my little miracle and I thank god everyday for giving me the chance to be a mother to such a beautiful strong little girl. My story is to just let mothers and others out there that doctors do not play god and prayer is just as strong. God Bless.




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Elisha Danielle Gardner, United States, KY
3/24/2011 1:26:55 AM
I met Destiney at the Ronald McDonald House in Cinncinati. Soon after I got to meet Miss Presley I fell so deep in love with her from the moment I layed eyes on her. She is the sweetest thing. I grew up with a friend whos brother has down syndrome so I im

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