Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Wednesday, March 18, 2015

Trisomy 18 Awareness Day 2015: 18 Things You Should Know

March 18 is Trisomy 18 Awareness Day. In recognition of this day each year, I share a list I compiled of "18 things I think everyone should know about Trisomy 18".

1. Trisomy 18 is also known as Edwards Syndrome.

2. The incidence of trisomy 18 is approximately 1 in 5000 live births. This does not include babies who were miscarried early or born still.

3. There are three types of trisomy 18: full, mosaic, and partial. In full T18, every cell contains a third copy of chromosome 18. In mosaic T18, only some of the cells contain an extra 18th chromosome. In partial T18, only a part of an extra chromosome 18 is present instead of the entire chromosome.

4. Having a child with trisomy 18 occurs more often in older mothers but can also happen to younger mothers.

5. Trisomy 18 is diagnosed in utero by chorionic villus sampling and amniocentesis, both of which are invasive tests and carry a small risk of miscarriage. Blood tests (Harmony, MaterniT21, Panorama) are also available to test for trisomy 18 as early as 9 weeks. These blood tests should be followed by CVS or amniocentesis if a positive result is received.

6. 99% of families with a child living with trisomy 18 describe them as happy!

7. 90% of babies with trisomy 18 have a heart defect. More and more babies and kids with T18 are successfully undergoing heart surgery!

8. Girls with T18 are more likely to survive than boys with T18, but there are some strong survivors out there -- both boys and girls!

9. Some babies and children with T18 can eat orally but most require a feeding tube. Some are fed both ways.

10. Every child with T18 is unique as T18 can affect the body in many different ways.

11. Babies and children with trisomy 18 have beautiful smiles!

12. The oldest living person with trisomy 18 currently (that I can find) is in her thirties!

13. Babies and children with T18 experience significant physical and cognitive disabilities but can learn new skills and interact with others.

14. Approximately 10% of babies born with T18 will reach their first birthday.

15. All babies and children with T18 are special.

16. Parenting a child with T18 is challenging in many ways, but it is also full of unique blessings.

17. Babies and children with T18 are adored by their siblings.

18. Life is a precious gift, including life with T18.

Our Julia was diagnosed with T18 on her second day of life.  We are very blessed to have had 382 very special days together. We miss her every single day and are honored to be her family forever.

Tuesday, March 17, 2015

A Rare Gift

This is a gift that leaves me speechless. My friend, L, created this portrait of Julia from one of my favorite photographs. L drew this portrait using colored pencils which is just amazing! I love it so much.