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The moon never beams without bringing me dreams of the beautiful Annabel Leigh
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About Annabel
Our beautiful daughter Annabel was diagnosed with Trisomy 18 (Edwards Syndrome) 4 days after her birth. By no means has this been easy. We've had to say "goodbye" to the life we imagined with our first child while accepting the reality that the time with our daughter will be far too short. Despite it all, we love our little angel more than words can describe and our goal is to provide her with comfort and love and appreciate every moment we can spend with her.
Thank you for visiting her site and please continue to keep her in your thoughts and prayers.
Thank you for visiting her site and please continue to keep her in your thoughts and prayers.
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Background on Trisomy 18
Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a chromosomal defect. It occurs in about 1 out of every 3000 live births. The numbers increase significantly when early pregnancy losses are factored in that occur in the 2nd and 3rd trimesters of pregnancy.
Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening in the early months and years of life. 50% of babies who are carried to term will be stillborn, with baby boys having higher stillbirth rate than baby girls.
At birth, intensive care admissions in Neonatal units are most common for infants with Trisomy 18. Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories.
Some children will be able to be discharged from the hospital with home nursing support for their families. And although less than 10 percent survive to their first birthdays, some children with Trisomy 18 can enjoy many years of life with their families, reaching milestones and being involved with their community. A small number of adults (usually girls) with Trisomy 18 have and are living into their twenties and thirties, although with significant developmental delays that do not allow them to live independantly without assisted caregiving.
-www.trisomy18.org
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Annabel's friends
Awww. Piggy and Stinky is so cute!
ReplyDeleteThey are too cute. I have been following your blog a long time. We just moved from Pa to TX and my son has Trisomy 8. Today I was telling the nutritionist about T8 not to be confused with Trisomy 18 and she said she had a client with trisomy 18 and I started talking about this blog and Anabel and what a miracle she is and guess what....We share the same nutritionist you and me!!! What an extremely small world. I was talking about Anabel's gtube and how it was different. Oh that reminds me if you are on facebook I have a Texas native friend who makes groovy tubies for gtubes. I ask her to make them for my son and she got 100 orders the next day for them! I had our dr and therapist look at them and they are really impressed. Her facebook store is Sweet dreams and happy thoughts.
ReplyDeleteAnyways I just thought I would comment. I am more a leerker than a commenter, sorry. I really love your blog and pray for your family.
Be blessed
Ashlee
http://ourjourneytoadoption.beckfamily143.com/
She is getting so big!
ReplyDelete