More from April 7, 1999

More from April 7, 1999:

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Hi again everyone,

Well, the boys vs. girls theory is just that- a theory,
albeit a popular one. I've been searching through our
research articles and the net and have yet to find an
article on CDH and gender. BUT, I haven't found an article
to disprove the theory either.

From our 1998 CDH Survey Results (keep in mind this is from
our membership and not the total population of CDH patients,
and I'm not including those cherubs who weren't born yet):

Boys- 67 survivors, 30 non-survivors (69% survival rate)
Girls- 26 survivors, 12 non-survivors (46% survival rate)
Total- 93- 72% boys, 28% girls

Now, these results are DRASTICALLY different from most
medical journal articles. The gender percentages are about
right, but the survival rate isn't. The survival rate in
most articles is 50% for all patients (which is about what
the 69% and 46% equal out to, give or take a few
percentages,... hmmmmmmm.... we'll have to study this one
more).

We have to remember that most doctors and nurses see very
few CDH patients in their entire careers- OBs usually see
less than 3, so do Level 1 U/S techs, surgeons in large
hospitals are the ones who see the high number of patients-
the ones with the most experience to make such statements as
"girls do better than boys". BUT are they talking about CDH
patients or all their patients in general?

Now, this is MY personal opinion (not a medical one, not a
well-researched one that I can prove) from all the research
reading I've done and all the 100's of families I've talked
to over the years- there are more boys diagnosed with CDH.
In fact, there are some hereditary syndromes that cause CDH
to occur in just boys (very rare, don't anyone freak out
over that statement- talk to your genetic counselor before
assuming anything). When we think about the fact that girls
outnumber boys in the general population, it is very odd
that there are more boys with CDH. As for survival rates
and whether girls do better than boys- I used to think the
same thing that a lot of you are talking about, but now,
it's hard to tell. I've seen boys stay in the hospital for
a matter of days and girls in the hospital for months. In
the hospital with Shane, I watched a little boy with CDH go
home breastfeeding at 2 weeks old and a little girl with CDH
die at 1 week old (out of the total of 4 CDH patients at
this hospital the entire 10 months we were there, Shane
included). I think it depends more on the location of the
CDH, the organs involved, and the lung growth rather than
the sex of the patient- and sometimes I even doubt that
after seeing babies with no diaphragm on one side live and
babies with just a small hole die. We also have to consider
not just CDH, but side effects like infections and
pneumonia- hospital controlled side effects that have
nothing to do with the child's gender, location of CDH, lung
growth, or organs involved. That's why we have the
complications question on the parent worksheet (membership
form) and survey- because you cannot just look at CDH alone
to make such a statement a fact- you have to know if it was
JUST the CDH that caused death or long hospital stays or
some other type of complication. Soooo, if a doctor or
nurse makes that statement, more than likely it's an
overall, in general statement, about their hospital(s)'s
experience with CDH patients and all complications
involved. I hope this makes sense.

As to whether you should believe certain statements from
doctors or nurses- yes, they are "guessing" unless they have
done actual research or read actual research or they're
making statements from their own experiences- neither is
wrong or right, just inconclusive and they are a matter of
their own opinions 99% of the time. And all medical
professionals are human, not encyclopedias that can spout
statistics from the top of their heads when asked a question
at any given moment. But like I tell everyone over and over
and over.... you can't go by general statements from anyone
(including doctors, nurses, other parents, research, and
even CHERUBS), each patient is different. : )

About the sides of CDH in girls vs boys-
Right-sided CDH is more common in girls, but remember, only
about 20% of all CDH's are right-sided and girls are more
likely to have left-sided CDH than right-sided, just as boys
are. Bilateral CDH (both sides) is about equal in both
sexes, and is very rare.

I hope this helps to answer some of the questions and I
didn't totally confuse everyone.

Dawn T.