Posted by Linda Adams on January 14, 1998 at 08:31:59:
I have an 11-week old daughter who has been
in NICU since birth. She was transferred from
Baptist Hopsital to Miami Children's Hospital on
12/23/97. On Jan. 9th, she underwent open-heart
surgery to repair a VSD. She has Trisomy 18 and
falls within the 1% of these children who survive
with this chromosomal anomaly.
We are having difficulty with the doctors and
nurses following our wishes to not move my
child from room to room every few days thus
increasing her exposure to infection. This is only
one of many concerns and there have been incidents
of negligence and I have filed a formal complaint
with the hospital.
However, this is not good enough as they will not
make us any promises about "her care" and
what should and shouldn't be done. They know
very *little* about this genetic disorder even
though they may be experts at cardiac care. I have
lost trust and faith in these "so-called" professionals
and want a court order restraining them from
moving her into an "open-room" with other sick
children. We've requested on several occasions that
we be called if and when there are any changes. This
continues to go unheeded.
I am now operating on 3 hours of sleep per night as
I can't trust these people and constantly have to either
physically be at the hospital day and night or call every
hour. This can't continue and I need some legal advice.
Please help if you can. Thanking you in advance for
your consideration of this matter.