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February 6, 2001
Alex finally had his first hospitalization, and I
thought you guys might be curious to hear how it went. Alex was
screened at birth for 30+ serious metabolic disorders and that's
how we found out he has MCAD. It is NOT law here in Pennsylvania
to screen newborns for 30+ serious metabolic disorders, contrary
to what some pediatricians and some metabolic specialists think.
My hospital just does the screening routinely on all their newborns,
and I sure am glad they did. (Some hospitals here do, some don't.)
Alex is now 2 years, 4 months. He has been sick before
with mild vomiting but he has never needed hospitalization, until
Wednesday.
First let me make a point that while we do live in
Pennsylvania, there are no Amish in our area. Suburban Philadelphia
has about as many horse and buggies as the Catholic Church has female
Popes—there aren't any.
Having said that, you're not gonna believe this.
We appeared
at the pediatrics unit in the hospital where he was born (the pediatrician
calls ahead and has us admitted so we can bypass all that ER/fill
out the paperwork/your kids looks fine/it's just a little vomiting/what
is MCAD/have a seat and wait 3 hours stuff). I calmly and simply
told the person at the desk in the pediatrics unit, and the nurse
standing there, "My pediatrician called ahead. I'm supposed to ask
for the pediatric doctor. My son has MCAD. It's life-threatening.
I have a protocol letter."
OK, are you ready??
The nurse said, get this.... "Oh yes, we've had several
little kids in here with these kinds of things."
SEVERAL??!
So I told her, "That's because this hospital screens
them at birth, so they don't die."
Several kids, as in, screen them at birth so they
can treat them early as per the protocol letter, in an ordinary
local hospital like this one. Several kids, as in, metabolic disorders
are not so rare when someone's looking for them. Several, she said.
As in, oh, I heard about this and I've even seen some of these things.
This is not a metabolic clinic, mind you - this is just an ordinary
local hospital with a pediatrics unit.
I believe her too because not one professional asked
me anything about MCAD—just the normal, have you been here
before for this, what's happening with Alex—normal questions.
You'd think he was being treated for an ordinary boo-boo, honest
to God. Everyone acted like they've done this before—and you
know what, I think they have.
Treatment was an idealistic dream. I swear, we could
have made the "This is how you treat these kids in ideal circumstances"
training video. They admitted us immediately. They read the protocol
letter, prepped him, hooked him up to the IV, and the pediatric
doctor telephoned the pediatric endocrinologist on call at Children's
Hospital of Philadelphia (where we go for consultation) to discuss
whatever issues of concern to them. No, they are not metabolic specialists
at our local hospital. It did not matter. Everyone knew how to follow
directions and knew how to call the specialist.
Less than ideal was getting there.
Per the plan established by our pediatrician, I called
my pediatrician's office from the car and asked for my pediatrician.
I told the receptionist my son has MCAD, it's life-threatening,
we're on our way now to the hospital, and I need to speak with my
pediatrician. I was told my pediatrician was not in that day. I
said that's fine, I need one of the other 2 pediatricians (all the
pediatricians are aware Alex has MCAD and what it means. They know
to call the local hospital ASAP and get us admitted so we can bypass
ER. I don't think the nurses know though.) I was put on hold and
a nurse - not a doctor, a nurse - came to the phone. I reiterated
everything to the nurse: my son has MCAD, it's life-threatening,
we're on our way now to the hospital, and I need to speak with a
pediatrician. The nurse asked some questions which were irrelevant,
and I wound up saying "look, I'm not being condescending, but all
the pediatricians are aware of MCAD and I need to speak with one
of them. All she needs to do for me is make the phone call so we
can bypass ER and save time—MCAD is life-threatening." The
nurse put me on hold—presumably to speak with a doctor. The
nurse came back on the line and asked all kinds of stuff - what
is MCAD, what does MCAD stand for, how long has he had it, how do
I know he has it, why does he have to go to the hospital, what are
his symptoms..."
Ordinarily I would welcome the opportunity for a 90-minute
dissertation on newborn screening and the negligent lack of it,
but this was not the time. I was majorly pissed. I could not even
imagine which possible aspect was the obstacle here—the "life
threatening" part, the "I need a doctor, not a nurse" part, or the
"now" part. It truly was not the nurse's fault. It seemed to me
that the pediatrician, who is not our regular pediatrician, may
have temporarily forgotten that her partner has a patient with MCAD,
and she did not come to the phone. No matter; at this point I yelled
at the nurse, "listen. Children's Hospital of Philadelphia wants
him hospitalized
Well, that
had some pull. They didn't realize there was a higher power (Children's
Hospital) involved. I was put on hold. The nurse came back on the
line and informed me that the pediatrician is calling the local
hospital now; I am to bypass ER, go directly to the pediatrics unit
and ask for the pediatric doctor.
That is EXACTLY what I asked for in the first place.
Geez, it's like they don't believe you.
The pediatric
doctor at the hospital, who's been there since summer, told me they
now keep a file on all these special kids they're seeing there.
She told me they'd add Alex to the file, and next time I can just
call the pediatric unit directly, let them know we're coming, and
that we're one of the special cases in the file. She said they'd
admit him, and I can call my pediatrician's office later, after
we're admitted and settled in the pediatrics unit. By the time the
pediatrician's office figures out that Alex needs to be admitted,
I can say, "Gee, I'm glad you say that 'cause we're already here."
Alex was on the IV for about 24 hours. They unhooked
him and let him go home after he ate his normal lunch. During a
period of about 23 hours, he took only 1 1/2 ounces of juice but
that was OK because he was on the IV during most of this time. The
unanswered question is why was he sick. Chris and I felt like we
were coming down with colds but we did not actually get sick. Alex
got a runny nose and congestion Tuesday evening, and he ate only
half his normal food amount, but he did drink. On Wednesday he ate
absolutely no food. He stopped drinking late Wednesday morning and
a few hours later he threw up. That's when we left for the hospital.
By the time we got to the hospital, Alex had a fever of 101.5 under
arm. His sugar was 69, the low end of normal (implying we got there
in time—you can do that when someone gave you newborn screening
and two years' notice). The time elapsed between his first vomit
and receiving IV dextrose was 1 hour and 45 minutes—that includes
time driving to the hospital, parking, finding the pediatrics unit,
prepping him, etc. They did admit us immediately. When we left the
hospital the next day, his labs were still not back—they had
analyzed a poopy diaper to see if he might have had a virus and
if so, which one.
When these kids come off their long sugar trips, (i.e.,
are unhooked from IV), do they always bounce around like a nut,
or is my little guy just really happy to be home? : ) Actually,
he did get sick the next day at home, but he did eat and drink enough
to keep from having to go back in the hospital. He was sick for
a total of 5 days, with hospitalization happening days 1 and 2.
I cannot even believe I might possibly be speaking
with my pastor right now, making funeral arrangements, if my hospital
had not spent frickin' $20 two years ago for a routine supplemental
newborn screening test. Oh, and speaking of church, at least one
family in my church has children with CAH (congenital adrenal hyperplasia,
a serious, life-threatening metabolic disorder detectable through
the $25 comprehensive newborn screening program at NeoGen). Treatment
is different from MCAD (different stuff in the IV), but the hassles
for the families are the same. They did not have the supplemental
newborn screening, and they found out when their son had a heart
attack as a baby.
My point is, metabolic disorders all together are
not so rare—we are everywhere. You just wouldn't always know
it by looking at the patients. Metabolic disorders are not an Amish
thing, they're an all-populations thing. People just don't know
it because they're not looking for metabolic disorders, much less
keeping files on these kids at local hospital pediatrics units.
Well, isn't it important to know, and to push for,
what is possible and doable? There's no reason every single hospital
everywhere can't be doing what my hospital did.
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