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["Melody O." <melody AT crecon.com>]

At 08:37 AM 1/12/05 -0700, you wrote:
>OP-ED COLUMNIST
>Health Care? Ask Cuba
>By NICHOLAS D. KRISTOF
>
>Published: January 12, 2005
>Here's a wrenching fact: If the U.S. had an infant mortality rate as good 
>as Cuba's, we would save an additional 2,212 American babies a year.
>
>Yes, Cuba's. Babies are less likely to survive in America, with a health 
>care system that we think is the best in the world, than in impoverished 
>and autocratic Cuba. According to the latest C.I.A. World Factbook, Cuba is 
>one of 41 countries that have better infant mortality rates than the U.S.
>
>Even more troubling, the rate in the U.S. has worsened recently.
>
>In every year since 1958, America's infant mortality rate improved, or at 
>least held steady. But in 2002, it got worse: 7 babies died for each 
>thousand live births, while that rate was 6.8 deaths the year before.
>
<snip>

>True, infant mortality and many other American health problems are largely 
>intertwined with poverty, and experience suggests that neither the left nor 
>the right has easy solutions for intractable poverty. But some of the steps 
>the government is now taking or talking about - like cutting back further 
>on entitlements, particularly those giving children access to health care - 
>would aggravate the situation. Last year, a study by the Institute of 
>Medicine, a branch of the National Academy of Sciences, estimated that the 
>lack of health insurance coverage causes 18,000 unnecessary deaths a year.
>
>As readers know, I complain regularly about the Chinese government's 
>brutality in imprisoning dissidents, Christians and, lately, Zhao Yan, a 
>New York Times colleague in Beijing. Yet for all their ruthlessness, 
>China's dictators have managed to drive down the infant mortality rate in 
>Beijing to 4.6 per thousand; in contrast, New York City's rate is 6.5.
>
>We should celebrate this freedom that we enjoy in America - by complaining 
>about and working to address pockets of poverty and failures in our health 
>care system. It's simply unacceptable that the average baby is less likely 
>to survive in the U.S. than in Beijing or Havana.

I do wonder if docs in other countries think themselves as much as gods as
those in the US.  

My 30 weeker spent 14 weeks in NICU before being sent home just to go back
for at least 5 more hospital stays throughout the first year.

He had oral aversion, they said.  He did like to breastfeed, but the docs
and nurse practitioners said that that "made them uncomfortable", so they
wouldn't let us try.  One docs fear was that with the chronic lung disease
cause from the ventilator he would retain fluid and make breathing more
difficult; so he was ordered to have restricted fluids..only from a bottle
and a feeding tube.  Next month we got a new doc, as they rotate monthly,
and she lifted the fluid restriction order...but my milk had already dried
up from stress.  He later got a permanent feeding tube surgically inserted
and uses it to this day.  

He had a grade 3 hemorrhage on the right side of his brain and a grade 4 in
the other, causing cerebral palsy affecting his right side and the need for
a shunt to drain the spinal fluid.  A grade 4 is the highest, meaning that
the blood has not only saturated the ventricles (the portion allowing
spinal fluid to drain-something everyone's brain needs every day) but also
has seeped into the brain tissue; where the blood was in the brain tissue,
the tissue becomes damaged and dissolves with the blood.  

My Michael has been through a lot, and I was right there by his side the
entire time.  This has been a blessing for us, because I believe that
staying with him is the only reason he is still alive.

There have been at least 2 times that I can remember where the nurse was
going to give him the wrong dosage of medicine.  I stopped them and they
checked their records and were horrified at the thought of what would have
happened.  

At one point Michael had to have an externalized shunt to drain the spinal
fluid because his internal shunt had gotten infected.  His reflux caused
the external drain to be a bit trickier, because his head had to stay at
the same height, never moving down or up an inch without re-leveling to the
cathedar-like bag hanging on the IV pole.  If he changed height, his fluid
would drain too quickly or back up.  I learned all about the procedure,
knowing that he was only allowed to be held 4 times a day for 30 min apiece
and the drain *must* be clamped when he was up or anytime he was readjusted
in his bed at all.  Diapering was a trick, trying to keep him at an incline
for his reflux caused him to scoot down to the bottom of the bed, so extra
care had to be taken that 1) the sliding was minute 2) clamp him before you
before you adjust him in the bed, and have a nurse check to make sure he is
level if he has to be adjusted.  One night I was asleep on the window bed
in his room and all of a sudden I woke up without any reason, I thought.
As I looked over at Michael's bed, there was a nurse, changing his diaper.
She put her hand under his neck and one under his butt and lifted him up
and to a spot higher in the crib.  I flew out of bed and asked her if she
had clamped him.  She said that she hadn't, but had only moved him a
little.  I did something I had never done, out of respect for the nurses
and their authority, but I clamped him and looked her in the eye and told
her that if she *ever* moved him, even just a little bit, he *must* be
clamped or it could drain all the spinal fluid in moments or create a
back-up which would cause more damage to the infection and possibly the
brain tissue.

In the NICU I rarely saw parents.  The parents that I saw, I knew and was
friends with. But many babies parents wouldn't come to visit until the day
before the baby was scheduled to go home.  They would come in for a crash
course in meds and treatment, being told that they had to sleep at the
hospital taking care of the baby before he could go home the next day.
When Michael's turn came to be scheduled to go home, I went to the nurse to
schedule the "parent training" room and sleep over and she looked at me as
if I was crazy.  She told me that I knew Michael better than anyone because
I was always there, but if I really wanted to she'd see what she could do.
I always wondered about the babies with severe problems going home with
moms that have only spent one night with them.. I was totally over-whelmed
and I had been there with mine!  I'd love to know how many of the babies in
the NICU with Michael are still alive; I hope they are, but I wonder.
 
My point is, it isn't a matter of money.  In the US in every emergency room
in the country, there is a sign that says that no one will be refused
needed medical treatment because of inability to pay.  The hospital that we
were at forgave our debt incurred in Michael's first 3 months of Michael's
life.  The insurance paid some, but he had incurred hundreds of thousands
of dollars and our portion was large.  The Shriners raise money every year
for cases like ours.

I think that it is a matter of being lax, and working against nature.  I
was told in the NICU that in a poorer country than ours there was an NICU
that ran out of room for those babies.  There were literally no incubators
for some.  So what they had to do is have mom and dad keep diapered but
otherwise naked baby inside their shirts with blankets over them.  This
skin-to-skin contact allows the baby to benefit from body heat.  It also
reduced the risk of death from bradycardia (heart too slow) and apnea
(breathing too slow or stopped) for a couple of reasons 1) because mom and
dad would feel if something was wrong and 2) because mom and dad's breaths
helped remind baby to breathe.

When I was in the NICU with Michael, the NICU was set up where there were
about 8 beds in a big room.  There would be 2 or 3 nurses assigned to the
babies. One night, a new nurse (she had worked there a long time, usually
with cardiac babies but I'd never seen her before) was assigned to the baby
across from Michael.  This baby had a skin disease and no one was sure what
it was, whether genetic or communicable.  They had doctor after doctor take
a look, and the docs who worked with rare diseases was on the case.  Well,
this one night this nurse had her first turn with this baby.  He was a
hated case; they had to keep a greasy ointment on him at all times, and
just try to put an IV in a greasy little baby, or try to get a bandage to
stick to one.  And especially a wiggly, crying little guy because he hurt.
So he was the poor little guy that tried all of the nurses patience.  They
would swear and fumble and fume about having to take care of him, and I
heard this several times a day because I visited Michael for all hours in
between meals and sleep.  As I was there this one night though, a horrific
thing happened.  To take care of this baby, you have to scrub first, then
take a sterile pack and carefully dress in a specific way as to keep
everything sterile.  So I watched this nurse do that.  She did the normal
murmuring under her breath.  Then the phone rang.  The other nurse had left
the room for a moment.  I expected to hear it ring for a long time and
finally hear the caller give up, or have her ask me to answer it.  Instead,
she walked over to the phone with the glove still on, pick up the phone,
talk for a minute, then walk back to the baby and continue working on him.
OH MY!  They didn't know if the rash was communicable!  Even if it wasn't,
though my first thoughts were of my Michael's nurse touching the phone and
then touching him, but my next thoughts were of that baby.  The baby had
open lesions on his body and could get a myriad of diseases because his
protective barriers were gone.  This nurse had just done the unspeakable!
(I walked over to the phone and cleaned it with the special solution for
killing germs on objects because the nurse didn't) Later I saw a blanket
that had been on the floor on his baby swing I'd brought from home; yet
another no-no in an intensive care unit!  Once something is on the floor it
gets thrown away or washed; you just can't be cautious enough in there.  I
didn't want to leave Michael's bedside that night, and did so at 4:00 am
simply because I could not keep my eyes open any longer, but as I left and
told his nurse to *never* let that other nurse touch my baby!

There was an interesting story from the ICU when Michael was there
recovering from a shunt placement surgery.  The room we were in (yes, I
always slept in his room with him) was a shared room, and the other mother
there and I started talking.  She complained how her little girl (probably
about 2) had had a grand mal seizure as she and her boyfriend/husband was
standing in line waiting to go into a movie.  No kidding, she actually
complained that the tickets were already paid for and they couldn't get
their money back and the paramedics said the baby had to go to the
hospital.  I couldn't believe it!  She was so upset over the *movie*!  She
would leave the side of crib down, forgetting to put it up, then fall
asleep in the chair with her baby in the crib.  I sat and watched that baby
and had to tell the nurse when the baby was about to topple out because I
couldn't wake up the mom.

IN the NICU I was told I should go home and be with my other children, and
one nurse actually said that I should be with my other children "who
realized who I was and appreciated my being with them".  I explained that
Steve was taking care of them at home, with the help of his mother, but
that since the hospital was 2 hours away from home, I needed to stay at the
Ronald McDonald house so that I could be with Michael; he did need me and
he did know who I was.  She actually argued with me about it...but this was
the same woman who said she'd never like having children and was glad when
they were old enough to leave home.

So to put all of my thoughts together and give my hypothesis of why I think
babies here don't do as well here, it has to do with the parents 1) not
being willing to learn about their child's condition 2) not being in the
hospital with their child as much as they could be.  It also has to do with
the docs and nurses 1) lackadaisical attitudes with washing hands,
administering drugs, not understanding or caring about procedures 2) not
valuing parents, breastfeeding, or *natural* ways of taking care of babies.  

I think real reform would be learning from those countries and seeing how
the doctors, nurses, and parents work as a *team* to ensure the baby gets
the right care.  I would also like to know how parents in those countries
parenting skills/desires to parent compare to those in the US. 

Best wishes,
Melody