Trisomy 18 - Rebekah Standing

9/29/10 - Rebekah has full trisomy 18 considered 'incompatible with life' by the medical community. We were told we would probably never bring her home from the hospital. And if we did, we would regret any life-saving surgeries that would do nothing more than prolong her 'meaningless' life.

Despite her extra chromosome, developmental delays, and physical challenges (like poor muscle tone in her back/neck, rocker bottom feet, webbed toes, valgus feet (opposite of club foot), double joints everywhere that increase risk of joint injuries, tracheostomy for obstruction and low muscle tone...), we work daily with her on occupational, physical, and speech therapies. We recently added cranial sacral therapy to her list too, and it has made a world of difference for her! She is now initiating weight bearing where she used to pull her legs completely into a fetal position unless we braced them. It is amazing how much she has progressed physically in just the last month or two.

In this video, her nurse is holding her on her leg. Rebekah tends to shake her head at times, but if you hold her head still, she redirects that 'need to move something' to another body part and we were surprised to see her initiating a full standing position! She doesn't have the coordination or balance to do this on her on, but this is still an amazing accomplishment for her and we look forward to many more!

Just remember, Trisomy 18 is a diagnosis, NOT a prognosis!

Category:

People & Blogs

Tags:

• trisomy 18
• edward's syndrome
• incompatible with life
• rebekah budd
• buddzoo
• hope

[tyler62126]

what is she wearing on her hands?

[buddzoo]

@tyler62126 These are a type of benik splints for her thumbs to straighten them out. A common characteristic of trisomy 18 children is an indwelling thumb. She would keep in next to her palm constantly. So she would wear these splints to hold her thumb out into an 'L' position.

[buddzoo]

The splint has to include the pointer finger so that there is enough resistance to keep the thumb from going back in. Then the splint had a kind of hard area right between the index finger and thumb that kept it in the 'L' position. She doesn't wear these anymore since she now keeps her thumbs in a more normal position.

[herblady45]

she looks to be in pain...I am so sorry

[buddzoo]

@herblady45 LOL. She was not in pain, she was mad. guess if you knew her, you could tell the difference. :-)

[umnayazhopa]

@herblady45 I agree, she looks like she is in horrible pain. I am sure if the girl could choose she would choose death over this "miracle".

[buddzoo]

@umnayazhopa Well, if you look at Rebekah's other videos, you will see she is happy and quite a ham. Just because someone is differently-abled does not mean they are in pain. She made it clear in the beginning she wanted to fight. I pray that you find compassion in your life and that God treats you with the same compassion you show others. And yes, she is a miracle because she only knows love. Sounds like you might need a little of that in your life.

[timm9]

i agree looks in pain hard to watch fat manly lady was just trying to be right and did not care.

[criswohlers]

hi, my name is Chris and I am the mother of Maria Paula, with nine months of life.

she was born with heart disease and still can not carry out the examination of karyotype evolution because all of it. I found Maria Paula like her baby, I would like to know more information on the development of your baby.

My email is cristiane_wohlers@hotmail.com.

Thank Standing attention.

[cozy262]

@budzoo who is the kid with the red hair at the end and also where do u guys live