“She’s a social butterfly. Her brother and sister couldn’t love her anymore than they do.”
Kimberly Miller, Mosaic Trisomy 13, 10/14/1987, Lehigh Acres, FL
Kimmie is our third child and was 7 1/2 weeks before being diagnosed. Though the doctors found that she presented at birth with an ASD, VSD and diaphragmatic hernia. Never was there a mention of a genetic problem and a geneticist was never called in for a consult. Kimmie’s hernia was repaired at 13 days of age and then we were directed to follow up with a cardiologist. We went home with Kimmie on Halloween night. She had some episodes of apnea and was eventually sent back to Massachusetts General Hospital in Boston as our hospital in town was not equipped to take care of her needs. They decided to get a chromosome test done and the geneticists assured us that he didn’t expect anything to come from that. When we did get the results and diagnosis, we were taken back as were the nurses and doctors at Massachusetts General Hospital, especially the genetics department. We had a stand in for the doctor and there he said “she has Trisomy 13 she will not live very long there’s nothing we can do” then he left and went home. Thank god for the nurses who helped us as we didn’t know which way to go. We got her on an apnea machine and home we went, no nursing no nothing just a family that was still in shock. Our pediatric doctor would not return my calls and when they finally did see her, it was so negative even though she was growing and was doing well.
We were told at one appointment early on that she wouldn’t live to be 3 and after her first birthday I asked the doctor if she could really tell me that she wouldn’t make it and not go by the books they read. She said no and I told her never to mention it again and she didn’t and provided Kimmie with the best care ever!
Kimmie had her own thoughts about what the doctors were saying because her ASD and VSD closed the May before she would have turned 3 and they would have had to do surgery. Her health was pretty good she did have apnea spells but we lived through that. Eventually we got a new ENT and she was concerned about Kimmie’s respiratory issues and after having her tonsils and adenoids out we found that she needed a trach – she was 10 years old. She whizzed right through that and did well and to this day is not suctioned at all.
Kimmie does have learning disabilities, she can’t read or write except for her name KIM. She went to school and loved every minute of it. She’s a social butterfly. Her brother and sister couldn’t love her anymore than they do.
Today Kimmie is 27 years old. She is an auntie to 1 niece and 3 nephews and loves every minute of it. She loves Facebook and has her own page even though she can’t read. She messages her family and friends a thousand times a day LOL. And she will be the first to tattle on someone when looking at the pictures posted LOL. Let’s say she has gotten her cousin in some trouble :). We didn’t have much support except family and friends as not too much was out there 27 years ago. We did have the SOFT Newsletter that came a few times a year but nothing like the support we have through this site and all the others on Facebook. Kimmie is our miracle and shows us every day that the children diagnosed with any Trisomy are COMPATIBLE WITH LIFE. I am forever grateful for the love and support we have gotten here and hope we can give some back. And at 27 she is such a lovey and a bit fresh she is a Yathzee champ and even though she has a trach loves the beach. She is such a happy girl and that’s all that really matters.