sudden death after improper positioning and poor medical care at 10 weeks old

[Guest guest]

I recently lost my 1o wk old granddaughter with an initial 7 days of life

diagnosis with partial Lissencephaly. She had some genetic research completed

and we know a few things that have been ruled out. I've been reading about all

of your children for 3 weeks now and feel like Dakota had many of the same

problems that are described about most of your children. Her primary problem was

the seizures that began at least on day 3 and cows milk protien allergy that

went undiagnosed until 6 weeks. She spent only 19 days of her life outside the

hospital and died of respiratory failure after being positioned incorrectly by

an x- ray tech who cut off her airway. This happened many times throughout her

hospitalizations, but was usually corrected through repositioning usually done

by her mom or I, but due to her already weakened state secondary to 4 failed

attempts at placing her central line the day before she had no strength to fight

back this time and her

heart stopped, as well. She was absolutely Beautiful, was extremely hypotonic,

was already on phenabarb and kepra for her seizures and had been diagnosed and

treated for NEC, even though it was never substantiated through medical testing.

DO ANY OF YOU KNOW ANY OTHER FAMILIES THAT HAVE SUFFERED THIS KIND OF LOSS--We

believe Dakota's death was directly related to her medical intervention and lack

there of. We are greatly saddened by the lack of concern the medical world has

shown towards her life and death, due to her special needs status.