The parents are very hopeful that he will have some recovery,
> but his test results are grave, so we just don't know.  It's been very
> painful for this mom to deal with healthcare providers who are trying to
> make her "face reality."  Several even suggested to the parents that they
> simply don't feed him, and another nurse told her while she was cuddling
the
> baby "You know he won't be this cute and cuddly when he gets bigger."

I cannot tell you how angry this makes me. I have a niece who had a
traumatic premature birth (a long story) and as I sat with her mother in the
NICU, a pediatrician came in and said "well, this baby's brain looks like
Swiss cheese. She's going to be blind and deaf and will never walk and I
doubt there's much brain function." Then he walked out. We got similar
comments from other staff about the terrible quality of life this child
would have and how it might be better if she was just allowed to die. Well,
they were wrong. Zoe is not deaf and not blind and is bright and funny. She
does have some physical disabilities - she walks with a limp and has limited
use of her left arm and hand. She is a joy to her family and clearly enjoys
her life.

Another mother I worked with was told that one of her twins had suffered
such severe brain damage at birth that she would not survive. She was told
she should just leave that baby in the hospital and take her healthy baby
home. She took them both home, feeling that she'd rather have her daughter
die at home than alone in the hospital. Three years later, both are doing
well. Yes, the one twin does have some physical disabilities but she is
developmentally right where her brother is.

When I worked in child welfare, we had a baby who was taken from a home
suffering from a number of things, including being shaken, malnutrition and
possibly drug use during the pregnancy. She needed immediate surgery so was
taken to the hospital. Her parents were excluded from seeing her, and
because she went straight to the hospital no foster parents were yet
assigned. Frankly, everyone expected her to die. I could not bear the
thought that her last hours would be spent alone and scared in a strange
hospital. So I went in as a volunteer and held and rocked her until she went
in to the surgery; I was touched when she came around from the anaesthetic
and saw me and immediately reached out her arms to me. We set up a roster of
volunteers to spend time with her, she made a full recovery, and has now
been adopted. But I was strongly discouraged from going in before her
surgery - the nurses kept saying "she's not going to make it, she probably
won't come back from the surgery." Well, if she hadn't, at least she would
have been cuddled and rocked and treated with tenderness in her last hours!

Why do health care professionals try to discourage people from loving their
babies and from hoping for the best for them? I have seen too many
inaccurate predictions about future outcomes - we really don't know what
will happen to some of these infants. And even if the baby is going to die,
isn't it better for him to be loved and cuddled and cared for during the
short time he has? Isn't it better for the parents to feel they have given
their baby the best they could, including breast milk, even if in the end he
doesn't make it?

Teresa Pitman

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