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Re: Tracey-

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.......

Yea, I agree about diagnosing other problems, epsecially based on

the thumb and radial anomalies and the spine. The MRI this coming

Friday is mainly for hte purpose of seeing her kidneys and of course

the extent of any spinal problems.

Here is one question...we are certain her kidneys function fine

since we haven't encountered any problems, but her geneticist is

saying they can function fine and be structurally malformed. Do you

know of this to be possible? I guess anything is possible. As far as

her heart.......this past Fall we had an EKG and echo performed to

rule out Holt-Oram syndrome...so we know her heart is in good shape

and just to make sure, we will monitor that on a yearly or 6 mo

basis. I just look forward to the MRI for the sole purpose of ruling

anything else out. I dread it for Lexi, but it is what needs to be

done.

Thanks!

Tracey

>

> My understanding of the VACTERL diagnosis, is that certain

> malformations in the body tend to happen at the same time. There

is

> a tendency for the malformations that are listed to go together.

> The purpose of looking into the diagnosis, I think, is that they

> then would investigate the other areas of the body on the list, to

> make sure that they are okay. So, if there are malformed vertebrae

> and also a thumb or radial problem, then this would tell them they

> should check the heart and kidneys. This would be important to know

> before a major surgery, I would think.

>

> In our case, we took Gabi to the ortho at age 9 months. They took

> an xray and then told me they had to retake it because she was

> wearing a necklace. I was like no, she isn't . they insisted she

> was, and brought me over to see the xray..As soon as I looked at

the

> xray I knew that the pendent was down her throat and inside, not

> outside. we took her to the ER for them to do a bronchoscopy for

> them to get the pendent out. The dr. was hopping mad, that our

> pediatrician had not checked out her heart already, since she had

> the vertebral anomalies and thumb anomaly. It was too scary that

> she had to have the procedure,not knowing for sure if she had other

> organs affected. We did get the echo done after that and it came

> out okay. anyway, this was our experience.

>

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