Some Interesting CDH Statistics and Listserv Flashbacks

We've been talking about the occurrance rate of CDH as compared to spina bifida and cystic fibrosis for years. Especially how low CDH awareness is!!! We've done a ton of research over the years and I was putting some stuff together this weekend for a project and I ran across a bunch of interesting old posts on our lists. I thought I'd post a few of them. Heck, I'll post several over the next few days. If any of you have any neat stats, please feel free to post too!



From April 7, 1999:

-----------------------------------

Re: Boys vs. Girls Theory

LOL, Heidi, now you've got me searching the internet, trying to find the
statistics on boys vs
girls born. I did not know any of the information you posted- learn something
new every day.
: )

This is what I found at www.infoplease.com (love this site, just found it- after
searching an
hour):
In 1996 in the US, 1,990,480 boys and 1,901,014 girls were born (ok, I was wrong
about the boy
to girl ratio- no idea where I came up with that, remember hearing it
somewhere). This info
that I found only includes babies born to White and African American parents (no
idea why it
didn't include other races). Total births for 1996 in the US was 3,891,494. If
we assume
(meaning no one knows for sure) that 1 in every 2500 babies has CDH, this means
that
approximately 1556 babies were born with CDH in 1996 in just these 2 races
alone- 4-5 babies a
day. WOW!!!!

Some CDH occurance trivia facts to think about in comparison to more publicized
devastations
(I'm not discounting any of these tragedies, Lord knows my family falls into
more than one of
these lists, this is just FYI):

-Approx. 1556 babies are born with CDH each year, approx. 775 of these babies do
not survive
(.04% chance of being born with CDH).
-Tornados injure approx. 1500 people each year in the US, 80 don't survive.
-In 1997, 306 people were struck by lightening, 42 didn't survive. (this means
we're 5 times
more likely to have a baby with CDH than to be struck by lightening).
-1n 1996, 37 people in the US were killed by hurricanes.
-118 people were killed by floods in the US in 1997.
-In 1989, 98 people in the US died of Botulism
-In 1996, 508 cases of Measles were reported in the US, 1 person didn't survive.
There were
238 cases of German Measles.
-There were 560 quadruplet births in the US in 1996.


I had a horrible time trying to find world birth statistics. Couldn't find a
thing on the birth
rate or gender rate.

My head is spinning thinking of all the CDH born in the world every day- and
with only 300
families in CHERUBS, so many 1000's of families are going through this alone.

Well, too much brain overload for me tonight. I promise to get all the other
e-mails answered
today (behind, yet again).

Dawn T.

More from April 7, 1999:

-----------------------------

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.

From our old Ultrasound Certification Petition Days

April 7, 1999:

Wow, lots of different opinions and stories on this one!

It has a lot to do with several things;
The technician's experience
The gestational age of the baby at the time of the
ultrasound
The type of ultrasound
The location of the organs during the ultrasound
Insurance

Most U/S's are given by U/S techs, but many OBs still do
their own U/S's and a lot of those OBs aren't well trained,
if trained in med school at all on doing U/S's (not sure on
how much training OBs have on this). There are even nurses
who are doing U/S's in some offices. I need to find out if
there has to be any certification to do an U/S- does anyone
know? My OB was young, just out of medschool, and fumbled
around during the entire U/S, and even checked off both of
the sides of diaphragm on his "list of organs to check
during an U/S"- Shane had no left diaphragm at all and I was
7 months pregnant. We also have to consider that most techs
rarely, if ever, see a CDH and they do upteen ultrasounds on
healthy babies each day. With any job, when you do an
uneventful procedure or task over and over, you tend to take
for granted that every procedure or task will be uneventful-
that's sad to say when you're talking a medical profession
and they should pay closer attention, but techs are human
too. I'm not excusing techs that don't make a diagnosis-
after 6 years I'm still very bitter that Shane wasn't
diagnosed and my doctor wasn't more experienced- but I'd bet
money that after me, he paid closer attention to his other
patients.

The age of the baby at the time of U/S plays a huge factor-
the lungs grow at the end of pregnancy and the other major
organs at the beginning, so what some techs may consider
"immature lung growth" at the time of the U/S could be a
CDH. Also, the organs CAN move up and down through the
diaphragm in utero and it is a matter of timing- this is
especially true in large defects. I've even had parents
call and say "my baby's hernia is GONE! His organs are back
down is his stomach, it's a miracle!". It breaks my heart
to have to ask "Did you talk to your doctor about the
results yet?" and when they say "No" (which they always do)
and I have to tell them that the organs move (because if I
don't, they'll often go weeks before they see their doctor
and then more devasted)- that's the 2nd worse part of this
job (hearing one of babies didn't make it is the worse).
When there is no full diaphragm to keep the organs in place,
they "float" around and if they happened to be down at the
time of the U/S, the tech could oversee the defect. BUT the
tech should be looking at the diaphragm itself too.

Insurance- ugh, I hate that word, it seems to be a "God"
over-ruling every decision we make about our babies'
health. Most insurance companies only pay for 1 Level 1
ultrasound, unless there is a medical need to perform
multiple U/S's or higher level U/S's. That is the probably
the biggest reason most CDH babies aren't diagnosed in
utero. Quite a few companies won't pay for any U/S's at
all. The good thing (if we can call it that) is that after
you have a CDH baby, your next pregnancy gets a lot more
attention and testing because we're marked "high risk". One
of my biggest goals is to push for better ultrasounds,
better ultrasound guidelines and training, and reprimands
for undiagnosed major birth defects.

Beyond the emotional aspect of knowing/not knowing, we have
to look at so much more. By not knowing, we have so many
choices taken away from us- where to deliver the baby, who
to deliver the baby, learning, finding support, making
arrangments for travel, lodging, work, other children. To
give birth and find out your baby has such a devastating
birth defect is one thing- to uproot your entire life at a
moments notice and be forced to make uneducated decisions is
another thing. For those of us who delivered at "backwoods
hospitals in the middle of nowhere" or who chose to deliver
at home- not knowing is matter of life or death when you
don't have the equipment and trained professionals at hand.

For the emotional aspect- I wish I knew (emotionally I did
know, but chose not to believe it), so I could have bonded
more with Shane when I was pregnant, so I could have held
him before they cut the cord, so I could have done so many
things that would have been so much more precious if I had
lost him. The hospital had me so doped up on painkillers
and sedatives ("to calm my nerves"- not by choice, they gave
me them without my permission through my IV)- it's a wonder
that I comprehended anything that was going on and to make
decisions when that way. I felt like a drunk person trying
to drive (guessing, never did that)- making decisions and
hoping I didn't crash or kill my baby, not really
remembering or being conscious of anything. If I had known,
I could have made better decisions ahead of time, had Shane
at a better hospital, and demanded to not be given any
medication. I also had an U/S in the first trimester,
because I was spotting and we thought I was miscarrying, but
nothing was found on that either. Other than the CDH, Shane
had multiple birth defects, including a heart defect and a
large extra blood vessel going from his heart to an
undeveloped ("squished" is what the doctors called it) part
of his lower lung (what little lung he had- 25%), plus other
"minor" birth defects that were never detected, along with
undiagnosed polyhydramnios. I had to literally beg and
plead for the 2nd U/S, and after 2 months the doctor gave in
and did one, but I never received any pictures from the
first U/S and I didn't receive one from the 2nd one until I
asked at my next appt- and the doctor reluctantly gave me
one of a lovely view of Shane's rear-end. It wasn't until I
got all of my records (which is another long story) that I
actually saw the other pictures and we're trying to get
those looked at by another doctor to see if you can see the
CDH- we're still trying to get the videotape, if they
haven't "lost" it again. <sigh>

Dawn T.

From Tiffany on October 31, 2006:

i have a 4 1/2 year old son that was born with a left sided cdh.. since then
i have had two miscarriages and this past august gave birth to a healthy
little girl... from what i was told from the many high risk docs that i had to
see.. was that to have another cdh baby would be like getting struck by
lightening... i was also given the 2% chance.. and when i was diagnosed with my
son's cdh i was told that 1 out of every 2,500 pregnancies is a cdh baby... i
believe if you look at those numbers they are just as close to the numbers of
babies being born with spina bifida.. ( 1-2,000) if that is the case then why
dont more people know about cdh right ??
My sons doctor told me that there are two types of cdh.. one like my sons
and there is another type that goes along wtih a syndrome.. usually there are
multiple other problems as well as the cdh.. limb abnormalities, heart
defects.........thanks for sharing.. tiffany mom to adam lcdh, asthma, reflux,
paralyzed vocal cord, HSP,

From Kate Rogula April 7, 1999 (can you all tell we had a busy day that day!?):

Here is some info I found useful regarding ultrasound technicians. First, I
think it was in American Baby Magazine last year. There are apparently no
laws to guarantee the expertise of the tech. It is up to us to be sure they
are qualified! Look for credentials from ARDMS, the American Registry of
Diagnostic Medical Sonographers, and be sure they specialize in ob-gyn.
Call ahead and ask if they have credentials from the ARDMS, and they should
also be asking you lots of questions during the sonogram about your medical
history and such. You can also call for a free brochure at 1-800-541-9754,
it's called "Ultrasound: Who is qualified to perform your exam?"

Hope this is helpful to you.

Kate, mom to Hailey left side CDH diagnosed at birth, lived 10 days, no
repair done. Also 2 yr. old Max and expecting another bundle of joy (BOJ)
May 20th, and biting my nails every day.......!!!!

News, info, requests, and more - need everyone's input please !!! :)
May 24, 2004 (wow, we still have some things to do on this list!)

Hi everyone,

I've been working behind the scenes with some of the volunteers and have some
things to tell and to
ask. :)

1. Fundraisers - We are looking for fundraising suggestions! Please feel free
to post any ideas
or suggestions.

We have 100's of items for sale on our web site through CafePress; t-shirts,
cookbooks, teddy bears,
calendars, toys, baby bibs, onesie's, adult size clothes, baseball caps,
lunchboxes, aprons, picture
frames, bumper stickers, and much more. The items contain many different logo
characters and there
is surely at least one cherub character that resembles your own cherub. You
can view them at:
http://www.cherubs-cdh.org/fundraisers/cafepress.html

We also have a fundraising contest going on, details are in our newsletter at
http://www.cherubs-cdh.org/newsletter/page9.shtml The deadline has been
extended to October 15th.

Also on the same page are details of our art contest, where your kids (cherubs
and siblings) can
submit drawings to be used on our CafePress fundraising items.



2. Volunteering - We need many volunteers! Especially for our Grant
Committee, Conference
Committee, Fundraising Committee, and State and International Representatives.
We also need someone
with html knowledge to help parents and Representatives create web sites. If
you have skills that
you think could help us, please contact me. Typing, database work, art, phone
skills, we'll take
anything! :) We are run solely by volunteers on a very limited budget so we
can use all the help
we can get.



3. Would You Be Interested In....

- A hardback book of stories of our cherubs? We may have to print several books
to fit in all the
stories.

- Helping to raise money by posting flyers around Valentine's Day? This would
involve printing or
finding a printer to donate a large picture of a cherub (that we would provide).
You would drop
them off to stores, banks, hospitals, gas stations, etc and people would donate
$1 to have their
name on the flyer and the flyer posted in the store. Then you would collect the
money and send it
in and we would post a special section in honor/memory of your cherub in the
newsletter. This is
something many large organizations do and it does raise a lot of money. But in
order to make it
successful we would need a lot of help from our members!

- Would everyone on the lists be ok with us forming a Listserv Committee that is
strictly anonymous,
made of 6 parents of survivors and 6 grieving parents that would vote when
problems on the lists
arise. That way I'm not taking all the brunt when we have to remove members
for not following the
rules. This is just an idea so far and I'd like to get input or other
suggestions.

- Don't forget the fundraising contest and art contest listed above!



4. Making CHERUBS Better

Are the lists too large? Do you feel you're not getting enough info about CDH?
Is there something
you would like to see on our web site?

I would sincerely like to hear your suggestions on what services you would like
to see and what
problems you have had with CHERUBS. Nothing is too trivial to mention and you
will not hurt my
feelings if you have a criticism! : ) But please, let's not put down other
members on the lists,
if you have a personal problem with another member, please e-mail me privately.


Ok, that's all I can think of for now, I've got a ton of e-mails to answer to
bear with me the next
week or so while I sort through them and respond. I will respond to everyone.
We're doing a lot of
revamping in CHERUBS right now so please be patient.


Dawn T.

It's so *great* to see some of our statistics from almost 10 years ago used by old members on other sites! "4 to 5 CDH babies born a day" is now posted across the internet. Getting others to talk about CDH and sharing our research from CHERUBS doing it - now, *that's* CDH Awareness!

0:-)

If anyone else has old list postings that they want to share, please post them! Barb and I were talking about how we all talked about the spina bifida stats with Logan's issues years ago.

I can remember being involved in conversations about Spina Bifida and other defects that were very well known that had a similar occurance rate or even smaller. I believe this probably occured during chats. Back in the 'old' days we used have great chats - can't remember where they were though. What did we use before we used Yahoo! Groups? Anyway, it really affected me thinking about how NO-ONE knew about CDH but EVERYONE knew about these other conditions. I remember researching them as far as Australian stats went and they were actually a little different to the US ones I think. We even had discussions about this at some of our Australian get togethers way back when.

Wow Dawn, thanks for bringing back those memories. The good old days :D

I've been reading a lot of old chats and e-mails and list posts the last few months.. it's been quite a walk down memory lane. I still have a lot of chat logs to go through. I need to start posting all the neat stuff from the old days more often. My favorite stuff is reading words from new parents who join who know virtually nothing about CDH and within a few weeks have learned so much at CHERUBS that they are giving other parents advice. All the polls, stats, even weird conversations we had trying to figure out the common link to CDH over the years... and here we are, years later, still doing just that!

And I tell you what...we all worked HARD in those early years! There were no other CDH groups, we had to find members through mail or doctors and find them ourselves or hope they found us. There was no recruiting. No other organization to model ourselves after, no other group to use ideas from. We came up with it all all on our own. And when I typed up the timeline.... wow, we've done a lot and we are pretty darn original and creative! Way to go, us! LOL.

What's really mindboggling to me is that 8 and 9 years ago we had so few families in CHERUBS when we first got on-line that I could remember everyone's names, cherub's name, dates, etc and how close we all were! Now, 2000+, I can barely remember my own name some days. lol. I do miss that "small group" feeling, but hopefully we can recreate that within the states and countries.

dawn
i remember when i first joined cherubs, in 1999 i think....i was originally looking for what cdh was because i had never heard of it and there was nothing online!!
when i told sydney's surgeon that i joined he was so happy. He said "i'm so glad you found them!! they are a great source of info for cdh parents"

i have a ton of papers from that first year, i use to print everything and put it in a book. there was a whole lot of discussions about how spina bifida was so well known and cdh was so unheard of, yet their statistics were so close.

i remember wanting to just suck up every word that was written here, and when my surgeons started telling us about ecmo, and bagging, and heprin, and silos and countless other things, i was almost prepared.
i walked in with some kind of knowledge of what cdh was and it was because of cherubs. thank you for that.

dawnn & sydney

You know it is crazy that more people don't know about CDH. When I found out I was sent to a high risk dr 2 hours away from my house well I went into labor early and that dr stopped my laber and sent me home at 2am by 6:30am they were back at 7 every 3 mins I made it to the local hospital 30 mins from the house she was born by c section. The dr's there could not handle this case the hospital just was not able to handle serious birth defect like this so she was sent to a different hospital cause the one that I was suppose to deliver at the ones that sent me home in labor would not take her so she was off to Carolina's Medical Center ( for all you NC folks ) We find out that this hospital that has her now is the best in NC and has seen tons of babies with CDH the other just a few.

I say if you know what you are going into check out all of these things. I thought this was rare but the dr's there say it happens more often then you think more often then what other dr's will tell you and that is probably cause they do not see many of these babies. And as far as the odds it is also way wrong for Celeste she just had her surgery last Wednesday and they found out everything was in her chest and it had been moving in and out. They did an x ray the next day thinking she didn't really have a left lung to find out that she has almost 80% of that lung. So do not put much stock in what they say cause sometimes they can be wrong.

BTW Celeste is doing great everything is back to where it should be she has this thing called a wound vac over the sponge that in in her wound to help with the drainage but the one thing I do not get is why would they give her methadone I don't think I spelled that right but you guys know what I am getting at.

Love the site can't get enough of it and it helps keep my mind off Celeste so that I do not worry so much. I am going to talk to her team that is what I call them now and see if they can get on and post some new info and goodies like that for everyone.

Hi Dawn,

I just want to say a HUGE thank to you not only from myself but from all of our Australian members. You have been an amazing support to us as we have been in the process of creating CHERUBS Australia and becoming an officially recognised group in it's own right.

I can remember how nervous I was writing to you and telling you our plans. I wasn't sure how you would react knowing that we wanted to start our own group while still maintaining strong ties to the US group. Don't know why I was worried. You being the wonderful person you are showed TOTAL support - to the point of offering us any of your documents to use as a basis for ours. You were so happy for us and excited about our plans. Things have certainly moved slowly for our group at times but we could never have achieved what we have without your guidance, support and help. CHERUBS has been the basis for so much of what we have done - so THANK YOU a million times over. I am sure CHERUBS UK feel the same way! :D

Thank you all for your support!

Dawnn - so glad you're here! And so glad we could help. I wish all CDH parents had the knowledge that they need. We'll keep working at it! :)

Jennifer - Welcome, welcome!!! I hope to see you at the Angel Ball in July since you're in NC too! :)

Danielle - ((((((((hugs)))))))) I am so proud of you and Kevin and Brenda Lane, our UK Reps!!! How could I not encourage another group who wants to help CDH parents? Any group whose intentions are solely to help CDH parents and to do good has 100% of our support!