Tuesday, February 20, 2007

I refuse to give up!

And this is why.

http://www.foxnews.com/story/0,2933,252878,00.html

Fox news reported on our newest "miracle" and quoted the doctor as saying...

The baby has experienced respiratory problems, a very mild brain hemorrhage and some digestive problems, but none of the health concerns are expected to pose long-term problems, her doctors said.

"We can deal with lungs and things like that but, of course, the brain is the most important," Dr. Paul Fassbach, who has cared for Amillia since her second day, said by phone Monday. "But her prognosis is excellent."

************************

I've gone through quite a few emotions since this story hit the airwaves. I still can't sort them all out.

After a rough month, I was almost on "E". But, thanks to the public misconceptions that were reinforced by the media and those doctors, my tank is full again and I'm back on the road.

23 comments:

chris and Vic said...

You sound like Joan of Arc! A crusader!

This can be exhausting---this business of saying your piece over and over to all the different venues. So pace yourself.

The Miami Herald contacted me immediately after I emailed them a response re: the article. Here is some contact info in case anyone else wants to get in on the discussion.> The article can be found at:
http://www.miami.com/mld/miamiherald/16737090.htm

Follow left-hand column to "Feedback," and then to "Letters to the Editor".
chris and Vic

The Preemie Experiment said...

Thanks for the kind words Chris!!

Here's my letter. I plan on changing the email address and sending it out to as many newspapers and TV stations and I can. After I wrote it, I realized I left out many preemie issues. I was trying to get it sent before my little guy woke up. I will be editing it before sending it off again.

*****
I have read and re-read your article entitled "Miracle baby is going
home to Homestead with parents"
http://www.miami.com/mld/miamiherald/16737090.htm.

I wish to inform you that the media, and those doctors, are reporting
wrong information on the future lives of preemies. They do not turn
out normal. Although I am not disputing the worth of a life,
reporting that they will be normal negates all of the struggles that
the parents of older preemies live with every day.

What is reality? If your preemie is spared disabling cerebral palsy
(almost never diagnosed before age 2) or blindness due to ROP
(retinopathy of prematurity), he/she will most certainly gain one of
the following issues related to prematurity:

psychological issues (OCD, anxiety disorder, bi-polar, schizophrenia)

mild cerebral palsy which will make it difficult for your child to
write, tie shoes, zipper a coat, button pants

chronic constipation which may require medicine for life

Autism

lack of age appropriate social skills

sensory issues (imagine not being able to hug your child)

feeding issues

weight and growth issues

reflux issues

sleep issues

coordination issues


If you are thinking, "these issues are not that bad" then you have
never lived with a very young child who stabbed herself because her
"thoughts" told her to. You have never lived with a child who has such
severe constipation that, despite adult doses of Miralax, can still
tear herself bloody when she has a bowel movement. You have never
lived with a child who will drop to the floor and scream when hearing
a voice on the loudspeaker. You have never lived with a child who will
cry because she is so tired that she cannot run with the other
children.

My child was born at 25.5 weeks. She is now 8 years old. The hidden
issues of prematurity and the lack of public awareness surrounding
preemies as they grow older inspired me to start a blog.

www.thepreemieexperiment.blogspot.com

I urge you to read it and see the other side of prematurity. You will
see, from many parents, the struggles associated with our "miracles"
as they age.

The media loves to report the "miracle baby" stories but fails to take
a look as they get older. Why is this?

There is a huge population of "miracle babies" that are getting older.
They have issues. Who is affected? Just the parents or the child?
Not by far. The entire community is affected. From the schools who now
have to educate these children, to the doctors and specialists who now
have design the best care for them, to the government agencies who
have to help with funding when parents cannot afford care, to the
taxpayers who will feel the impact when their taxes are raised to pay
for it all.

I am only asking for equal time. When parents of preemies see these
miracle stories, they are left asking "why is my child not normal?" It
is not fair that the media is portraying prematurity is such a
positive light when so many are suffering.

J.net said...

I first heard this late last night, then this morning, I was shocked that the doctor was already predicting this baby should have a "normal" life and no long-term health problems. If he was honest, he would say that presently, the prognosis is good, BUT there is no way to predict her future a month before her due date. In fact, even age 2 would be severely pressing a prognosis for her future. This doc's statement is "extremely premature."

Anonymous said...

On one of the news clips I saw a doctor was asked if this means that the medical world should re-evaluate the limits of viability based on this baby's survival (as in trying to save younger babies). The doctor answered "yes". I just sat there shaking my head.

I fear for this little girl's future.

Clark Bartram said...

Check out my most recent post when you get a chance and let me know what you think. I also wrote in reference to this "article".

Lori said...

We should re-evaluate the limits of viability based on ONE baby's survival?!? Nothing about that idea even sounds remotely medically sound. It's a little like deciding that because one person beat cancer doing nothing but changing their diet and meditating, we should now forego all radiation, chemotherapy and surgery for every other cancer patient. My guess is we would have a whole lot more people dead from cancer.

This story makes me sad. Every story like this makes me sad, because I have to live forever with the "what ifs" for my own 23 weekers who died shortly after birth. But like others here, I also feel angry at the way these stories are sugar-coated and misrepresented. The idea that they can already project an "excellent" prognosis for a baby born 18 weeks early is crazy.

I have a question, that perhaps Helen or someone else well versed in prematurity studies can answer. Where are the survival statistics coming from? Are they coming from the survival rates reported from hospitals, and are they only based on the babies who are actually resuscitated? Would 23 weekers like mine, who were never resuscitated or spent a minute in the NICU be factored into those survival stats? What about babies born all of the country (or world for that matter) in smaller, more rural settings where attempts at resuscitation are not even an option? I guess my general question is that when someone like NeoDoc says that 23 weekers have around a 30% chance of survival, where is he getting that number? Is that his hospitals stats, or is that a number based on a larger pool? And does it take into account the numbers of babies born at that gestational age where no attempt at resuscitation is ever made?

Would love more info. on this if anyone has it.

Anonymous said...

The doctors thought she looked like a 23-weeker, and I suppose technically she might indeed be. She was probably planted mid-cycle.

Of course, for this baby, we know exactly when the egg was fertilized because she was IVF! And that's what's being thrown around for her age. She's not directly comparable to naturally concieved babies measured by menstrual age, I'd think.

(Note I could be wrong, but that's how I read the latest articles)

Lickety Split said...

I think that Lori makes the best of many good points. When you review medical literature, the size of the study is important. It's clearly more useful to compare apples to apples and many of them. I always tell my medical students that a study population of "1" is not something to bank on...it's an anecdote.

What's more is that you have to look at what was being studied and how it was studied. Is the primary study endpoint to examine survival? Were the variables controlled for? For instance, it would be FAR more useful to compare a large number of preemies born at a specific time of gestation against a control group of the same number of term babies.

Not being a neonatologist, I won't quote you that literature but I will tell you that my personal experience as a preemie (being considerably healthier than many of the children here) is not something I would want someone taking and applying to the world at large.

Statistics apply to populations. When it comes to individuals they still have to make decisions based on their own best information and value sets. I cannot say that I fault PE for having this blog or for being vocal but I think that it's important to realize the media as one of several culprits here too.

In my town for instance, the newspapers never write anything positive about doctors or the hospital I work at which is a major regional medical center. They don't talk about some of the great things that are done. They have in essence, biased the public against us to the point where we have many families that we have to work very hard with to gain the necessary trust to deliver care to their loved ones.

I would caution the readers against false hope...but I would say that some hope is better than no hope. I wasn't a micropreemie so I cannot speak to that. I personally wouldn't want aggressive measures to save a child of my own born before 25 weeks and there is nothing in the laws of my state that says I have to resuscitate one. The chances of burden on this child are too great for my personal value set.

Of the many parents who've posted here...I cannot argue with you because there is nothing to argue. There is horror in reading your accounts. It had me in tears last night as I fell asleep reminded of the difficulties I have had as a child and adolescent.

I was lucky...and that's all it was. Plain. dumb. luck.

Anonymous said...

I didn't realize that she was an IVF baby- so 22 weeks IVF, dating from conception, is the equivalent of a 24 weeker dating by LMP. Interesting, and not nearly so extraordinary when stated that way.

terri w/2 said...

Lickety Spit said "I personally wouldn't want aggressive measures to save a child of my own born before 25 weeks and there is nothing in the laws of my state that says I have to resuscitate one"

Hmm. .perhaps others who are more well-versed on this could comment, but. .I believe that the recent federal "Born Alive Act" as well as the 1986 federal "Baby Doe Laws" would outweigh your state laws, so if you were to have a child at or below 25 weeks at a tertiary center - they WOULD attempt resuscitation whether you'd want them to or not, if this baby came out with any measure of life in him/her. It has happened numerous times to others who did not want these measures too.

My daughter, one of twins who sustained a grade IV IVH was a 25 weeker - she had apgars of 1 and 3 prior to intubation. We asked that life support be dc'd following her hemorrhage, and we were flatly denied this by her neonatologist. We were asked if we wanted a DNR which we did, but to remove life support - he said they could not.

I am forever haunted by this.. .21 years later, she is very, very severely, multiply disabled - she's been in the hospital 3 times in the past month with surgeries and complications thereof. Her life is filled with suffering - and where is her neonatologist now? Still saving babies like her and younger.

Lori said...

Actually terri w/2, this is something that continues to confuse me too. I have asked more than once on NeoDocs blog why there isn't some sort of universal protocol in place, but have never gotten an answer. It came as a big shock to me that so many neos advocated for resuscitation and heroic measures to be used on babies below 24 weeks. My husband and I were told point blank that our babies were below the threshold of viability (23 weeks) and that essentially survival was not possible. It was only when the perinatal social worker came to see us when I was in labor, that I got a hint that maybe that wasn't exactly true. She wanted us to confirm that we did not want "heroic measurse" taken after birth. I remember saying in my grief stricken, exhausted state that it was our understanding that there wouldn't be any point. She sort of vaguely confirmed that, and agreed that survival was unlikely. However, I remember even then feeling unsettled that the question was asked of us when we were given the distinct impression that survival was not a possibility.

There was no Neo present at our children's birth to confirm they were not viable, and we didn't know to ask since we didn't think survival was remotely possible.

Now, I realize that our children's chance of survival was certainly slim, and in hindsight they both showed few signs of vigor or attempts to live. My heart tells me they wouldn't have made it regardless. Still, I went through a very painful time when I realized that at a different hospital, or with a different doctor, we might have been presented with very different options.

I know it is hard to create generalized protocol when every situation and baby is different, but it seems like there should be something in place that at least provides parents with the same information and options. Maybe that's too much to ask.

But anyway... at least from my experience terri, not all hospitals resuscitate babies under 24 weeks, or even present it as an option. I do know of other 23 weekers who were not resuscitated either. One of which was born at UW Medical Center, a pretty major Level III hospital.

Lickety Split said...

terri, the federal laws would theoretically outweigh my local laws and we can thank Ronald Reagan for that. Nonethteless, there are safe harbors in this mess. Unfortunately, different doctors and hospitals have differing degrees of "aggressiveness".

As a doctor, I really don't like to see references to imply that "all" doctors are a certain way or have a certain philosophy because we don't. Unfortunately in the preemie situation you don't always have time to "shop" for a doctor who is in line with your own thoughts. As a doctor who deals with dying on a daily basis, I can tell you that there are varying degrees of "aggessiveness" too.

The Preemie Experiment said...

Here's what the Born Alive Protection act states:

''Person'', ''human being'', ''child'', and ''individual'' as including born-alive infant
(a) In determining the meaning of any Act of Congress, or of any ruling, regulation, or interpretation of the various administrative bureaus and agencies of the United States, the words ''person'', ''human being'', ''child'', and ''individual'', shall include every infant member of the species homo sapiens who is born alive at any stage of development.

(b) As used in this section, the term ''born alive'', with respect to a member of the species homo sapiens, means the complete expulsion or extraction from his or her mother of that member, at any stage of development, who after such expulsion or extraction breathes or has a beating heart, pulsation of the umbilical cord, or definite movement of voluntary muscles, regardless of whether the umbilical cord has been cut, and regardless of whether the expulsion or extraction occurs as a result of natural or induced labor, cesarean section, or induced abortion.

(c) Nothing in this section shall be construed to affirm, deny, expand, or contract any legal status or legal right applicable to any member of the species homo sapiens at any point prior to being ''born alive'' as defined in this section.

terri w/2 said...

As I had said previously - I'm not well-versed, but thank you Lickety Split, Lori and Preemie Ex for comments and clarification.

L.S. - wasn't trying to say that all physicians feel that they should save every baby at or under 25 weeks, but it sure does seem like lots of them do. I believe you and I are on the same page.

Lickety Split said...

terri-

sorry. I wasn't trying to imply that we weren't on the same page. I was referencing the frequent media depiction of physicians as a unified group of health vigilantes with their own code of what's best. The true doctor-patient relationship is a partnership in this day and age. The days of paternalistic doctors should fade as the 21st century goes on.

prematurelabor said...

This exact media event has motivated me to start a blog explore prematurity and the politics and ethics that surround it.

I welcome all of you to visit and comment on posts I will make in the future.

Thank you for your work - I am glad I am not the only one concerned about how prematurity is portrayed.

Helen Harrison said...

To Lori who asked:

"I have a question, that perhaps Helen or someone else well versed in prematurity studies can answer. Where are the survival statistics coming from? Are they coming from the survival rates reported from hospitals, and are they only based on the babies who are actually resuscitated? Would 23 weekers like mine, who were never resuscitated or spent a minute in the NICU be factored into those survival stats? What about babies born all of the country (or world for that matter) in smaller, more rural settings where attempts at resuscitation are not even an option? I guess my general question is that when someone like NeoDoc says that 23 weekers have around a 30% chance of survival, where is he getting that number? Is that his hospitals stats, or is that a number based on a larger pool? And does it take into account the numbers of babies born at that gestational age where no attempt at resuscitation is ever made?"

These are really good and important questions and I'll do my best to address them. It may take several posts, in fact I could almost write a whole book on premature survival and follow-up statistics -- their varying presentations and meanings.

I guess the overall short answer to your questions is -- it depends on the denominators a hospital or physician uses to generate the statistics.

Look at sample size. A small sample size can be highly misleading -- for example, if a unit treats 2 23 weekers and 1 survives the doc could then say he has a 50% survival rate at 23 weeks. But a few more babies going one way or the other could drastically shift the odds.

Different denominators can yield different results. When someone says X percent survives intact, you need to know X percent of what? Pregnant women carrying live fetuses who come in to deliver? Live births? NICU admissions? NICU survivors? Childhood survivors? Also what does "intact" mean?

Another factor to consider is that at 23, 24, and sometimes at 25 weeks parents may, at some hospitals, and depending on who is on call for the delivery, be given options about resuscitation. These babies are *usually* entered into the statistics as delivery room deaths, but it is *usually* not clear whether they died in the delivery room despite heroic efforts or whether comfort care was initiated from delivery.

Hospitals and doctors are reluctant to release such information for obvious reasons -- they don't want the anti-choice people picketing their facilities and burning crosses on their front lawns. I don't blame them.

But to show how different denominators change the picture we can look at the EPICure data:

of 138 live births at 22 weeks gestation; 116 (84%) died in the delivery room; 22 (16%) were admitted to the NICU; 2 (1%) survived to discharge; and 1 (0.7%) had a severe disability at 30 months. So survival without severe disability (by 30 months) was 0.7% (as a percentage of live births) and 5% (as a percentage of NICU admissions).

At 23 weeks there were 241 live births. 110 (46%) died in the delivery room. 131 (54%) were admitted to the NICU; 105 (44%) died in the NICU; 26 (11%) survived to discharge; 1 (0.4%) died after discharge; 11 survived without disability at 30 months, giving this gestational age group a 5% rate of survival without impairment diagnosable at 30 months (as a percentage of live births) or 8% (as a percentage of NICU admissions.

The anecdotes such as the one currently in the news will always raise questions and make headlines, but a large and
agreed-upon denominator and some kind of agreement on outcome measures is needed to make sure docs aren't just comparing apples and oranges.

Another anecdote to consider: One of the smallest preemies ever to survive was born, not in a modern perinatal center, but in a workingman's cottage in rural England in 1847.

According to an account in the _Medical Times_ of 1850, the baby girl, born after a pregnancy of 158 days, weighed only 1 pound (454 grams) and was 11 inches in length. She was placed in a box by the hearth and cared for by her parents.

Her physician commented, "She is [at age 3] still of small make, but is quite healthy and takes her food well. I have attended the family...since her birth but my professional services have never been called for on her account."

Helen Harrison said...

To Lori again:

I should also have added that the EPICure statistics are particularly meaningful in that they are geographically based (rather than simply hospital based). They are a national cohort from the UK and Ireland.

Lori said...

Thank you so much Helen for understanding my rambling questions, and for taking the time to answer them!

I am well aware, even with only a few basic statistics classes in my undergraduate work, how misleading statistics can be. The stats you quoted are very interesting, and do help to answer some of my questions.

One point of clarification: If I am reading you correctly then you are saying that the reported "delivery room deaths" likely include both infants where resuscitation was attempted and failed, and those for whom only comfort care was given? Essentially that group is lumped together as a whole, correct?

Helen Harrison said...

To Lori who asks:

"If I am reading you correctly then you are saying that the reported "delivery room deaths" likely include both infants where resuscitation was attempted and failed, and those for whom only comfort care was given? Essentially that group is lumped together as a whole, correct?"

Usually. At least that is my understanding of the situation.

Helen Harrison said...

To Lori, again.

You might want to see the article by Kaempf et al. "Medical guidelines for periviability counseling" in _Pediatrics_ 2006;117:22-29.

My email address is Helen1144@aol.com if you would like to contact me and I can mail you a copy.

Helen Harrison said...

Re: Why do so many weird things -- like the report of the "21 week" preemie -- come from South Florida?

A preemie-mom friend in Miami sent me this:

COMMENTARY
Living under the influence of the Weirdness Magnet

By DAVE BARRY
dbarry@MiamiHerald.com

We need to find it, dig it up, and get rid of it.

I'm talking about the South Florida Giant Underground Weirdness Magnet.
It's buried around here somewhere. It has to be. How else can you
explain why so many major freak-show news stories either happen, or end
up, in South Florida?

O.J. Simpson, for example. Why is he here? Did anybody in South Florida
ever say, ''Hey O.J.! Why don't you pack up your golf clubs, your one
glove and your remaining cutlery, and come be part of our community!''?
Of course not! Nobody WANTED him here. He was DRAWN here, by the Giant
Underground Weirdness Magnet.

Or consider the 2000 presidential election. In the rest of the nation,
voters looked at their ballots, then picked either one presidential
candidate or the other. Only here did a scarily large number of voters
attempt to vote for either (a) none of the presidential candidates, or
(b) ALL of the presidential candidates, or in some cases both (a) AND
(b), thereby screwing up the entire election and causing a Level Five
Lawyer Infestation from which we have yet to fully recover. What caused
so many incompetent voters to clump together into one huge clueless
mass? That would be your Giant Underground Weirdness Magnet.

Another example is the Miracle Virgin Mary Grilled Cheese Sandwich.
Remember? Granted, the Virgin Mary has appeared on other food items.
But only in Hollywood, Fla., did she appear on a grilled-cheese
sandwich that was preserved by its owner, who (Why not?) kept it on her
nightstand for more than 10 years -- during which she claims it did not
develop mold -- and then (this is the miracle part) she sold it on eBay
to a casino for $28,000. The casino also paid $5,999 for the pan.
Please do not try to tell me that this could have happened in an area
that was not being bombarded with powerful weirdness rays.

ONE AMONG MANY

There are many other South Florida phenomena that can only be explained
by the Giant Underground Weirdness Magnet, including the Versace
slaying, the Elián González fiasco, Tim Hardaway and Donald Trump. The
current example, it goes without saying, is the Anna Nicole Smith
Corpse Battle and Freak-a-Palooza, now playing in Fort Lauderdale. Of
COURSE it had to happen here. And of COURSE, instead of a thoughtful,
dignified, decorous, mentally stable judge, we got an American Idol
contestant -- sometimes sobbing like Dorothy when she had to say
goodbye to the Scarecrow; sometimes firing off one-liners that he
apparently thought were hilarious. Ha ha! Stop it, Judge, you Krazy
Kourtroom Karacter!

No, really, Judge: stop it.

Anyway, the question is, what can we do about this? I don't mean the
Anna Nicole Smith mess; that will continue metastasizing for a LONG
time. Zsa Zsa Gabor -- Yes! Zsa Zsa! -- is already involved; it's only
a matter of time before somehow, some way, we hear the words ``Kato
Kaelin.''

No, it's too late to stop that. But maybe we can prevent this kind of
thing from happening here again, by eliminating the cause of our
problems. That's right: we need to get rid of the Giant Underground
Weirdness Magnet. But first, we have to figure out where it is.

I think I know. I figured it out scientifically.

CENTER OF WEIRD

Here's how: I took a map of South Florida, and I marked the locations
of the major weird phenomena described in this column. Then I looked at
this map in a scientific manner, considering both the location of each
phenomenon, and its Weirdness Quotient. And then a chill ran down my
spine as I realized where the magnet would have to be buried, to cause
this particular weirdness pattern.

It's under the Golden Glades Interchange.

We have no choice. To get that thing out of there, to give this
community hope for a normal, or at least less-weird, future, we need to
demolish the Golden Glades as soon as possible, using either dynamite
or -- if the wind is right -- nuclear explosives. Then we need to dig
up the Giant Underground Weirdness Magnet and send it to some place
that could use more weirdness, such as Cincinnati.

You're thinking: ``But Dave, what if we follow your plan, and the
weirdness magnet isn't there? Then all we will have accomplished is the
total destruction of the Golden Gl ... Oh, OK, never mind.''

Exactly. So come on, South Florida: Let's do this NOW, before things
get any worse. For all we know, Kato is already heading this way.

Lori said...

That's hilarious! Dave Barry does it again!