Bad Experiences

[Guest guest]

Boy! I ask a question and don't check my mail for days and look what

happens! I was afraid I wasn't the only one with poor experiences.

My experience in the hospital wasn't bad at all. Emma stayed in the

Special Care Nursery for 7 days after she was born, and the nurses

were really wonderful. Come to find out, 5 years earlier a lady had

a DS baby at that hospital and they wouldn't let her take her baby

home until the baby could bottle feed, even though the baby was

breast feeding well. Why? Because the nurse wanted to make sure the

baby would be able to eat if the mother decided not to keep her! The

mother was a nurse herself, and has given several presentations to

the hospitals in Calgary, where this happened. I'm forever grateful

for that. Education really is key.

On the other hand, Emma was born with a very rare birth defect called

craniosynostosis which means part of her skull closed in utero and

her head was misshapen. Of course, we saw many doctors over the

first days and weeks of her life. We asked all of them about this

weird head shape she had and they all intimated that we were just

unaccustomed to looking at a DS child. I had been give some old DS

calendars at the hospital and they had tons of pics and not one DS

child had Emma's weird look. In other words, the DOCTORS were so

busy looking at Emma's DS that they didn't see the real problem! I

literally diagnosed her myself by doing research on the internet.

This leads to our really horrible experience with a doctor. A child

with craniosynostosis can only be " fixed " surgically. We moved back

to Dallas (from Calgary) and got an appt with a craniofacial

specialist, who is trained as a plastic surgeon. We show up for our

appointment with this surgeon, our precious daughter all decked out

and smiling, expecting to hear about the surgery that she needed. He

dispensed with that after about two minutes and then pulled out a

book he had written about craniofacial surgeries and it showed a girl

with DS who had the same problem as Emma. He referred to the girl as

IT. He then asked how we were doing with the DS, which was a segue

into telling us that she was " one of those " with a tongueing problem

and wouldn't we like surgery for that, too. He pointed out some

other negatives he saw in her appearance and then basically demanded

we sign her up for surgery then and there.

I was just crushed for two weeks and am still obviously upset. This

happened in May. He hadn't seen my beautiful girl at all, just a

problem he felt he needed to solve. I realize that plastic surgery

and DS is a big debate and I'm not trying to go there, but we had not

at all indicated a desire for his help in any area but the cranio and

he just shoved his opinions right on us. The good news is that the

Dallas area has another specialist who is just the kindest man. His

receptionist told me that Emma was one of his favorites. While I

certainly don't expect that from all our doctors, it sure helps. :-)

The further I get from this experience, the more I feel sorry for

that first doctor. He is surely missing out on a lot of beauty in

life. I am so grateful to have a heart that sees it; my life is

enriched, not decreased by looking at the person rather than the

diagnosis.

Wow! That got long. Thanks for reading it and letting me get it off

my chest (as if you have a choice in cyberspace!).

Sincerely,

Jill (Mom to Luke, , Song, , & Emma -- DS, craniosynostosis)