Another Cloud

[Guest guest]

Long time no chat, guys. Here's one to scratch your collective heads over.

The bazillion geneticists that we've met have long maintained that Kennedy's

mito was either passed down maternally or was a result of defective gene's

on both our parts. They have also insisted that my wife's brother should

have no such chance of a problem with his kids. Well, looks like lightning

might be striking. He and his wife recently delivered a seriously premature

girl (28 weeks). She survived the early delivery and was doing quite well

and up to 12 pounds at home. Then suddenly has started experiencing

extremely similar conditions that Kennedy experienced at similar size and

age from birth. Difficult feeding, blue moments, etc. She is now in ICU,

intubated, and the vampires are maintaining low hope and suggesting they

take her home for family time (the end).

Here's the question. Does anyone out there have a child who has been

diagnosed with mito of any flavor but has physical cardiology problems as

well. Holes, malfunctioning valves, etc.? My bro-in-law hasn't thrown in

the towel but he's getting a pretty nasty gut-shot here. We all thought he

had no risk but looks like maybe we were all wrong. Anyone have any

experience here?

Kennedy's Dad

Hairston

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> Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

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[Guest guest]

Wish I had more to offer than my condolences to your borther in law and his

family.....Lexi had very similar episodes with bradycardia, desaturation,

etc., but no physiological defects (ECHO, EKG, etc were all normal). I'll

keep them in my thoughts...

ruth

mom to Mitch (5 1/2) and Lexi (2 1/2)