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

Sunday, March 18, 2012

18 Things You Should Know About Trisomy 18



March 18 is Trisomy 18 Awareness Day. In recognition of this day, I have compiled a list 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 3000 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 can be diagnosed in utero by chorionic villus sampling and amniocentesis, both of which are invasive tests and carry a small but real risk of miscarriage.

6. Newer blood tests such as MaterniT21, Panorama, and Harmony may also be used to detect Trisomy 18 as early as 9 weeks. A positive test result should be followed up with CVS or amniocentesis for diagnosis. 

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

8. Girls with T18 are more likely to survive than boys with T18.

9. Some babies and children with T18 can eat orally although 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.

17 comments:

Jan said...

Beautiful!

L said...

This is such a good post! I put a link to it on my Lilly's blog. :)

Anonymous said...

So beautful

Anonymous said...

Thank you for sharing, your family is beautiful!

Anonymous said...

Im aware. My sympathies and thanks for your openness.

Anonymous said...

As blessed as you were to have her in your lives so too was she blessed to hav all of you.

Jan said...

Wonderful. Blessings.

Jennifer said...

These are very good key things for people to know.

Anonymous said...

Thanks for sharing your story and your family.

Sandi said...

Thank you for helping us understand more and to be aware. I know little Julia's life has changed you and your family forever.

Anonymous said...

Hi. Im doing soem research since this afternoon we were told that our daughter is likely to have the syndrome, since her wrists are contracted. I didnt know about the peculiar way of contracting the hand, so this afterrnoon I didnt pay attention to fingers position in the ecography. Tomorrow amniocentesis will be done. Thank you for helping me to see things in such a different way/ Now I understand that, if my daughter has the syndrome, it means that I have been blessed, in a different and special way. Julia made the best desition by choosing you to receive her.

Anonymous said...

Beautiful

Anonymous said...

I have sister with trisomy 18, she is 24 now. By the way, she can walk and read.

Anonymous said...

I had a son with T18 that past away after only 3 days.Every second with these Angels are a magnificent blessing.Please continue to blog about T18 to educate and motivate more research. Our children deserve it.Hugs and prayers to all the T18 families.

John C. said...

My parents have been told by the Dr's that my sister at the age of 38 is the oldest living known to the medical community! Shr is fluent in sign language although she does not cook her own food she does feed herself.. She learned to walk at about age 4..The doctors have no theory other than the amount of love she recieves from her mother and father plus her 5 siblings.She ha had 3 open heart surgeries and given a St. Jude valve on the 3rd surgery which has continued to operate well beyond it's expected life cycle! She is a todler in the body of a 38 year old woman is well aware of her surroundings! So much so that when you think she is not paying any attention to you and you look away for a moment you may be surprised to see her standing in front of you looking for you to share whatever you may have lol..love respect and prayers go a long way! My parents are now in their mid 70's the rest of her children have moved out and started families of their own myself included and none of our children have any such defects! Although it is a tough life for my parents they pray every day for one more day with her.. taking on a child with trisomy 18q is no small task! Add in 5 other children I give my parents all the credit in the world for their countless sacrifices..

Meg Bramwell said...

Our baby was born with Trisomy 18 in 1985 but lived only four months. "It was the best of times and the worst of times..." We experienced both the 'agony and the ecstasy' of loving a very special child. Hannah was a precious gift and we will always be grateful for the brief time we spent together. I know she is with Jesus right now and I'm looking forward to the day when we can be re-united with her in His Heavenly Kingdom. My heart goes out in love to those of you who are still journeying with your special child.

Unknown said...

My aunt is 47, and has Trisomy 18. I'm wondering now if she is the oldest living person with Edward's syndrome.

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