Wednesday, May 7, 2008

Canadian IVF Study

Helen posted this under the comments of another recent blog entry. I moved it to its own post so the comments can be kept separate and so the information would be easy to find for people searching.


Helen Harrison here, reporting from beachside at Waikiki where I just attended the 2008 Society for Pediatric research:

Here was an excellent study of IVF that bears on the discussion at hand:

[4305.1] The Cost of Irresponsibility

Bridget Spelke, Annie Janvier, Richard Brown, Danielle Vallerand, Keith J. Barrington. Pediatrics, McGill University, Montreal, QC, Canada; Obstetrics, McGill University, Montreal, QC, Canada.

BACKGROUND: Multiple births increase the risks of fetal, maternal and neonatal morbidities. The present epidemic of multiple births is partly due to assisted reproductive technologies (ART). In contrast to Canada and the US, many countries regulate ARTs. In these countries, single embryo transfer (SET) during IVF is the norm. However, mothers with a history of infertility have increased perinatal morbidity even when a single embryo is transferred. In previous studies, 10% of women who have IVF and SET deliver before 35 weeks (and are therefore admitted to NICU).

OBJECTIVE: To determine the impact of ART on resource utilization and outcomes in our NICU.

DESIGN/METHODS: We reviewed all multiple births admitted to the Royal Victoria Hospital NICU born between April 2005 and July 2007. Babies and mothers charts were reviewed. Using modeling and our patient demographics, we estimated how many days of complications could have been avoided if singletons were born to these mothers, had SET transfer been used during IVF.

RESULTS: During that period, 82 babies from ART multiple pregnancies were admitted to the NICU, representing 17% of NICU admissions.
4 mothers (9%) had previously experienced the death of a premature singleton.
42 mothers gave birth to 75 babies following IVF (15% of NICU admissions): average GA = 32.2wks, mortality 7%, intubation 34%, 60% TPN, 88% gavage, 6% BPD, 12% NEC / perforation.
If SET had been used in these women, and only10% would have delivered < 35 weeks, we could have avoided: 6 deaths, 5 severe IVHs, 270 eye exams, 4 surgeries for severe ROP, 260 intubated d, 643 oxygen d, 950 TPN d, 2001 gavage d, and 3082 NICU days.

CONCLUSIONS: Although some multiple births occur spontaneously, the current enormous increase in multiples is human-made, the lack of legal or voluntary restrictions on ART practices are responsible for 17% of NICU admissions, bringing about unacceptable financial and emotional costs. These admissions could be avoided. To reduce the number of multiple gestations, many countries have made SET the norm, and have drastically reduced the rate of multiples, while overall not affecting the pregnancy rate. We should take example from these countries.
E-PAS2008:634305.1

Sunday, May 4, 2008 9:15 AM

Platform Session: Clinical Bioethics (9:15 AM - 11:15 AM)
***

40 comments:

Kyrsten said...

Yes, make the doctors talk about this!

We chose ICSI/IVF because we wanted more of a "control" factor-- I didn't want to take fertility drugs and wind up being asked to reduce... We felt it was unethical (for religious beliefs, and for the fact that after enduring years of infertility, I couldn't face that!).

However --I'll say it again and again-- only vague mentions were made of the consequences of multi-embryo transfers resulting in a multiple pregnancy.

We did some research on our own, but I also heard a lot of "stay away from the Internet, it'll just misinform you." I truly thought we'd be OK, because I was closely monitored and "doing everything right..."

Here again, folks should be calling for better reproductive medicine: quality over quantity. Responsibility over fiscal advantage.

23wktwinsmommy said...

I had my twins spontaneously...my father has a fraternal twin brother. I feel uncomfortable talking about fertility treatments because I did not experience infertility, and I can only imagine what it feels like to desperately want a child and be unable to have one without intervention.
But truth be told, if dh and I ever dare to have more, I pray we have a singleton. I love my twins and parenting twins is amazing, fun, stressful, and everything else you can imagine. But I want the best shot at having a healthy, full term pregnancy.
Not trying to go off topic, but does anyone have any realistic statistics on what my chances of having twins spontaneously are again? Again, paternal grandmother had one set of fraternal twins.

Kristie McNealy said...

There definitely has to be an improvement in patient education before ART. There was a study last November in the Maternal and Child Health Journal which:

"showed an increased rate of cervical incompetence, uterine bleeding, pregnancy induced hypertension, placenta previa and placental abruption in mothers who used ART. In addition, the babies of mothers who used ART had an inceased risk of low birth weight, prematurity and extended hospital stays after birth."

I don't know what it feels like to struggle with infertility, but I imagine it would make many of these risks sound like they are worth taking.

Anonymous said...

"If SET had been used in these women, and only 10% would have delivered < 35 weeks, we could have avoided: 6 deaths, 5 severe IVHs, 270 eye exams, 4 surgeries for severe ROP, 260 intubated d, 643 oxygen d, 950 TPN d, 2001 gavaged, and 3082 NICU days."

I guess I'd like to see how they came to this conclusion. How do they know that using SET would have caused only 10% of these women to deliver prior to 35 weeks? Are they saying a mother who delivered twins at 32 weeks due to pre-eclamspia could have made it 4 additional weeks if she were pregnant with a singleton? How did they prove that?

I am a mom to IVF twins. I transferred two embryos and both stuck. I had an emergency cerclage at 16 weeks due to incompetent cervix and battled contractions then entire time I was on bedrest (15 weeks). I delivered at 31 weeks due to PROM.

Had I not been pregnant with twins, I would not have seen a peri, and my non-existant cervix length would have never been caught by measurement (the OB I started with did not do measurements). I'd have lost a singleton baby, of that I am sure.

Now I am in no way supportive of going through IUI when you have way too many follices maturing and women ending up pregnant with HOM's as a result. I think this gives infertility treatment a bad name. And I am now a total SET convert, because if I do IVF again I will absolutely do a SET. But that is based on my pregnancy experience. When you are trying to conceive and spending a huge sum of money doing IVF, it's hard to take that risk of transferring just one, sometimes this is your only chance at pregnancy due to financial constraints.

I think regulation of the number of embryos to transfer would require insurance coverage requirements. And believe me, it would have been far cheaper for my insurance company to pay for my IVF transfer of one embryo than it was my and my babies' extended hospital stays. And we are lucky ones, my preemies had a very uneventful NICU stay and no preemie issues.

Anonymous said...

Helen Harrison to Krysten and Kristie:

The docs at the presentation of this research kept blaming the parents for all of the IVF multiples.

They said that parents *insist* on multiple embryo implantation. They say parents think twins are cool -- two for the price of one, so to speak.

I finally went to the mike and informed the docs that most parents (quoting the study Stacy recently posted) know absolutely nothing about the horrible consequences of prematurity, and that the fertility docs, who are making a bundle of money from all of this, have no incentive to inform them properly.
***

I heard so much anti-parent talk at this conference. When the term "parental autonomy" is used, it is "code" for "parents want everything done all the time and we are helpless before their irrational demands."

This, I maintain, is because docs, who have strong financial incentives to preserve this situation, do nothing to help parents make truly informed decisions. Often, they over-ride the decisions of parents who *are* informed and don't want their extremely preterm babies treated aggressively.

Then they turn around and blame the parents for pushing the envelope with preemies!
***
More from the IVF conference presentation from my notes:

IVF docs define "success" as a live birth >20 weeks.

Multiple implantations are no more "successful" than single embryo transplants.

85% of parents seeking fertility treatment say they actually want to conceive twins.

In the US, single embryo transfer happens in only 8% of cases.

We need to redefine the "success rates" used by these doctors and perhaps forbid the implantation of more than one embryo (several countries have done this already). To make this policy work, insurance plans will have to cover single embryo transfer. In doing so, they will save a great deal of money in the long run.

Lack of regulation in this area leads to billions a year in medical costs (not to mention the human costs). The failure to regulate means the government is, in effect, responsible for 17% of avoidable NICU admissions.

I also heard, in a Q&A at another session, that the use of surrogate mothers to carry a couple's embryo(s) sets up an inflammator response in the surrogates womb and, as with a transplanted organ, the fetus is often rejected, miscarried or born prematurely. Makes sense.

As I watched, night before last, the huge, lovely beachfront banquet (black tie) held by (or in honor of -- not sure which) March of Dimes, I had to wonder what this noble orgnization is doing about the most important contributing factor to the rise in prematurity. DH estimated the banquet as costing $200/person at the very least.

Helen

Susie Korbel said...

Slightly off topic, but to 23wktwinsmommy: your father having a fraternal twin brother is entirely irrelevant to you having twins. Increased probability of fraternal twinning can only be passed down maternally because it affects the ovaries releasing multiple eggs. Kind of surprised you wouldn't know that since you have twins.

I found it scary that the article said that women who suffer from infertility are automatically at higher risk because they have increased perinatal morbidity even with only one embryo. So you're screwed either way. You can't get pregnant on your own, and when you get pregnant with help, you're more likely to have complications.

That thought alone definitely makes SET more attractive- lower the risks as much as you can.

85% of parents want twins? Sounds like if ART is such a big moneymaker, that mandatory counselling about preemies and multiples should be conducted prior to any ART. Heck, they can even charge for it and make a few bucks.

Kyrsten said...

Helen said, "This, I maintain, is because docs, who have strong financial incentives to preserve this situation, do nothing to help parents make truly informed decisions."

I think you're right on the money (no pun intended). It took us a long time to even find a doctor in our area who would limit our embryo "creating" to begin with.

Success is a live birth >20 weeks?! If I'd been there I would've strangled someone. Do you think the couples who turn to ART in the first place consider that "success?" I don't!

Interestingly, we *were* required to have counseling before our IVF; it had more to do with how stable our marriage was (!) and how we'd "dealt" with our infertility, than medical counseling.

23wktwinsmommy said...

To Susie, who is "kind of surprised" I thought there was a connection to my dad being a fraternal twin and who said: "your father having a fraternal twin brother is entirely irrelevant to you having twins. Increased probability of fraternal twinning can only be passed down maternally because it affects the ovaries releasing multiple eggs."

I've read that fathers can pass on the gene for hyper ovulation to their daughters. My thinking therefore, grandma had the gene for hyperovulation (she "double ovulated" and had twins) and that gene got passed to me via my father.
(sorry for being off topic here.)

Anonymous said...

This calls to mind the couple in Minnesota, I believe, who desperately wanted a baby so they tried fertility drugs after only a year of trying the natural route despite the fact that both were very young and healthy. This couple got pregnant with six babies and refused to reduce due to religious beliefs. The babies were born at twenty-something weeks. All of them were a pound or less. Only one survived.

I fully believe that parents who make choices like this should be required to visit a NICU, to talk to parents who have had children in the NICU, and have a full understanding of what it means to have babies who need medical intervention. People seem to believe that having a baby early is no big deal because babies survive in the NICU all the time...as exampled by shows like Jon and Kate plus eight....it makes the NICU and parenting multiples seem fun....

How is watching five babies suffer and die fun?

Sheila said...

Not to be a genetic stickler or anything, but the X-linked hyperovulation gene can be passed from either parent. If your father had fraternal twin siblings, he could in fact carry the X-linked gene - he himself would not have twins unless the woman he married also carried the gene, but could pass it to his children. So if the gene was passed from the father's DNA it will 'appear' to skip a generation. Still, even possessing the gene doesn't mean that you will experience frat twinning, but it does mean that you could pass the gene to your children too.

Sheila

Kellars Mommy said...

I am one of those mothers who went through treatments to get pg with my 1st ds, I lost him at 20 wks but it was nothing to do with the treatments , I have a IC. I again think that your opinion on this all depends on where you sit, if you are a mother like myself who has a condition that makes getting pg difficult you of course are all for it, if you are someone who can get pg with ease then of course you look at it differently. I deserved to be a mother just as much as the mother who gets pg w/out any intervention. If I hadn't had help the first go round I doubt I would be a mother right now, with the condition that I have usually getting pg once will sort of *even* it all out and getting pg again should not be as hard.. With my assisted pregnancy Cameron was a singleton, with Kellar whom I had no help with getting pg started out as a twin. So in my case it was nothing to do with assistance and I'm sure there are other cases out there as well.

Susie-twins can come from either side, not sure where you got that info from!

Anonymous said...

I can understand why uninformed people would think that having twins or triplets is kind of neat and want to try. I can remember saying something like "Wouldn't it be fun if I was pregnant with twins or triplets?" to my husband shortly before our first ultrasound. After being in the NICU 109 days and looking at the lists of patients on the board labeled "Twin A, Twin B" or "Triplet A, Triplet B, Triplet C" (or worse "Twin B" with no "Twin A"), it hit me that if I had been pregnant with twins (and we didn't need fertility treatments), they simply wouldn't have made it. Made me thankful that my son was a singleton.

My husband and I want more kids. But we are going to discuss my situation with a perinatologist. As much as I want to have another child, I feel like it would be irresponsible to put a child through a traumatic micropreemie experience (potentially ending in death) if it can be prevented. The potential child's life (whether short or long) should be what is considered above all else. We were only planning to have two children the old-fashioned way and then adopt. Depending on what the perinatologist says, we may end up adopting sooner than later.

17% of NICU admissions is a high percentage. Considering 20 weeks as a success is...well...asinine.

Anonymous said...

I'm pissed off that the RE doctors are blaming multiple births on parents. My first and only IVF resulted in my twins born at 24 weeks 6 days. No one at my clinic (supposedly one of the best in NYC) ever discussed the dangers of multiple pregnancy with me. I did not want twins, but that was only because I didn't have a lot of experience with newborns and I was nervous about how I'd manage with one baby, much less two. My husband's sperm count was low but not disastrous, and the IVF clinic pressured us to do ICSI because they feared there wouldn't be enough embryos. We refused to do ICSI because of some reports that it was connected with higher birth defects. Five of my 16 eggs fertilized, but we did not know how many embryos would be alive to transfer until 5 minutes before the transfer on day 3. The doctor came in and said, "You have 3 four-cell embryos left. They're slow -- we would have wanted them to be eight cells by now. You didn't do ISCI so not many eggs fertilized. So we're going to put all 3 in." That was it, then he started to walk out the door. I didn't object because what he said made any chance of pregnancy sound so hopeless. My husband, concerned, started to ask about the possibility of triplets while the doctor stood in the doorway, obviously wanting to leave and get back to the assembly line of patients they had backed up. I said to my husband, "It sounds like what he's saying is that there's not a lot of chance so we have to use all 3." The doctor left the room and we transferred all 3.

My sons Sam and Steve were born weighing 1 lb 12 ounces. They turned 3 in March. Every day I thank God that they survived and are doing so well. They did well enough from the start that the doctors never had to raise the issue of whether to continue treatment. They are happy, social, smart, charming, well-behaved, wonderful little boys. Sam survived intestinal surgery for NEC in the NICU, and he has mild CP that affects his walking and fine motor. But he can walk, climb playground equipment, feed himself, do puzzles etc., on his own, and although his speech can be blurry it is understandable. At their 3 year old evaluations for therapy their IQs tested as normal, and I have no doubt they will be able to lead happy and independant lives.

At the same time, I am aware that their premature birth may affect them in ways we can't yet tell. If there was a way I could go back in time and have them be born individually, I would.

I think Helen is absolutely right that parents should be better informed and allowed to make decisions about how far to take their premature babies' medical care. I've never been the type of person who would say "life at any cost" and I've always believed that quality of life is important. I have to say, though, that in the heat of the moment I'm not sure that I could have said not to try to save them. I think the only way I would have said not to resusicate would have been if the doctors said there was absolutely no chance of any quality of life. If there was a 1% chance I think I would have said, try it. I would have said this not because I was deluded about the odds or unrealistic about the future, but because my level of guilt was so great when my kids were born that I felt I would bear any cross if only they would live, so that I would not have to face the even worse guilt if they died. I felt guilty for doing IVF, I felt guilty because I thought I must have brought on the premature labor even though my doctor had not banned any activity. So I'm not sure how much education would have changed my decision.

terri w/2 said...

Helen said: "As I watched, night before last, the huge, lovely beachfront banquet (black tie) held by (or in honor of -- not sure which) March of Dimes, I had to wonder what this noble orgnization is doing about the most important contributing factor to the rise in prematurity. DH estimated the banquet as costing $200/person at the very least."

I am dying to know if the MOD sponsored this black tie beachfront banquet!! Any way to find out? If this WAS sponsored by the MOD, I wonder if this falls under their "research" category? How does a beachfront banquet make "healthier babies??" And wouldn't there just be a tremendous amount of very pissed off people if they found out that their sweat and time put into the WalkAmerica campaign was used to wine and dine neonatologists at a beachfront in Hawaii rather than helping babies and families? Yikes.

Kyrsten said...

Kellar's mommy, I am "with you" on that where you are with wanting a family affects your outlook! I never thought that I, a fairly private person who hates needles, would give herself twice daily shots and openly discuss "egg and sperm quality."

I remember staff looking at my (surviving) son's ID card and say cheerily, "oh, so where's twin A?" When I finally went ballistic on one department in particular (the lab, for receiving one-too-many bills in my dead son's name), I found myself in the presence of a social worker assessing my mental state...

Anonymous 11:12, I hear you on guilt-- but my situation has colored my point of view even further: I wish we knew the gravity of Jonathan's condition, so that we might have decided to not resusitate... simply because watching what he went through in his three short days of "life" was too horrific to recount. So I have that burden, too.

(Where is Stacey's post on guilt, again?)

And I'd never heard that ICSI carries a higher risk of birth defects!

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

The original reason I jumped online to post this morning is because I just saw the Today show on our local NBC affiliate... where they are having a competition for "best Mom," or something like that.

One of today's featured moms is a mother of 6, one singleton and quads. She speaks of the longing for a child, and desperately seeking fertility help, and being told to reduce... and lo and behold! She is proud that she defied her doctors, because she has been "blessed by her faith" with 5 healthy children.

I find myself blinded with tears when I watch this stuff. Once again I am back in my hospital bed, with everyone telling me my sick, premature twins will live and thrive because I have faith.

I don't want to rain on anyone's parade, but considering the number of women in my "loss of multiples" support group, and the women here... won't there *ever* be a report on the seriousness of the fertility/multiples/premature birth problems?!

Kyrsten said...

BTW, if a person is genetically likely to have twins, does she have a better chance of carrying to term, since her body is "pre-programmed?" Or does she have the same risk as someone who did, say, IVF?

Anonymous said...

"BTW, if a person is genetically likely to have twins, does she have a better chance of carrying to term, since her body is "pre-programmed?" Or does she have the same risk as someone who did, say, IVF?"

Not in my case. I come from a long line of fraternal twins in my mother's side. My brother & sister, My mom's sisters, my grandma's sisters. All carried to term, all blissfully unaware they were even carrying twins until (surprise) a second baby was delivered.

I, on the other hand, tried for 3.5 years to become pregnant and was finally successful with IVF. Two embryos transferred, and both stuck, twins! You would think my body would be able to handle this, right? Wrong, I had IC and almost lost them at 16w4d. I had an emergency cerclage and spent the next 15 weeks on bedrest, some of it hospital bedrest, and made it to 31 weeks when one of them PROM'd.

terri w/2 said...

Interesting stuff this twinning. I have a STRONG history of twinning in my family. When I was pregnant, my Drs. eyebrows went up when I told him that there were 9 sets of twins on my mother's side. One aunt died carrying her 2nd set - several twin sets were very premature and did not survive. Lo and behold, I too, was preg with twins. Since then, 2 of my nephews have fathered twins and one neice has just had a set of twins. One of these sets were somewhat premature, but have done well despite both having grade 2 IVH's, one shunted. The other two sets were full term.

Twins from what I understand are more concerning when it's a maternal history, however, in my family, there are certainly boys carrying the trait too, as well as identical twins. Identical twinning is usually not inherited from what I remember from nursing school.

There is also another type of twinning called "half-identical" twinning where the egg splits first and then is fertilzed be 2 different sperm - I believe this is what my girls are, as they have a large birthmark in exactly the same place, moles in the same place, the hospital told us they were identical. .but one has reddish brown hair with hazel eyes, the other brown hair and brown eyes. (One had red hair the other blonde when they were babies).

I cringe when I hear these moms on TV with the quads, etc. .however, these women get SO much better prenatal care, as they are taken SERIOUSLY. .everyone KNOWS that prematurity is going to be an issue if there isn't some MAJOR intervention done. Whereas, with twins, it seems that many Drs. are still just not taking that very seriously. And they should.

23wktwinsmommy said...

Terriw/ 2, excellent observation!!
I found out I was pregnant with twins when I was 5 weeks. I was automatically set up with a high risk OB. After 20 something weeks I was going to be seen more regularly with more ultrasounds than a non-high risk pregnant mother. But we never got to that point.
I happened to have an ultrasound at 23.2. At this particular exam they were going to check my cervix only because I was carrying twins and it was the OB's preference to check it around this time.
Thank God she did. I was 3 centimeters dialated and Twin A's membranes were bulging and I hadn't felt a thing. The twins were born 3 days later, the day we were suppose to be on a plane to California (I live on the east coast). I had received clearance from my OB to take this flight. Had I not had that internal exam I could have delivered on the plane. I didn't feel painful contractions until I was completely dialated and S's foot was literally coming down my cervix (my waters didn't break.)
So in a sense, I was treated like a high risk patient with regard to the internal exam, but I certainly would not have been permitted to fly had it been triplets or more. And if I ever dare to have another, I will not be flying anywhere while pregnant.

Anonymous said...

--She is proud that she defied her doctors, because she has been "blessed by her faith" with 5 healthy children.--

TPD here. What a load of crap that is - the notion that "having faith" is going to save the children of people who have it. That is a subject that would fill volumes.

Maybe to those who share the same faith it is reassuring? Not sure. How anyone can spend any time in a NICU and come away thinking they are special because of their religious beliefs is beyond me. Eventually having greater spirituality? Yes, I can see that, but not in the "faith entitled me to a miracle" sort of way.

terri w/2 said...

Anonymous - well said. The "faith" thing is really an irritant when it comes to this. .talk about guilt-provoking. How come YOU (and baby/ies) blessed with a good outcome, healthy, and God did not see fit to bless ME with the same. Religiousness in that context really is sickening. It's similar to the McCaughey book "The Seven From Heaven". .like Pergonal had nothing to do with this fiasco. Ugh.

****
23weektwinsmommy - I have found too that people are followed as high risk, but that a high risk OB isn't scheduled to start seeing them until 26 weeks. It seems that if we were FAR more proactive that pregnancies would not have to end at the most dangerous point of all - where you landed at 23 weeks, where I landed at 25 weeks, if our obstetric care was improved. I look back at my pregnancy and am certain that I was having contractions off and on for several weeks, low back pain, etc, but of course I blew it off as carrying twins - who wouldn't? Most likely these were contractions that finally resulted in PROM. The end.

Nancy said...

I agree about being more proactive, especially when there are multiples involved. However, that basically means that all pregnancies need to be considered high risk. And while I think any pregnancy can suddenly take a turn for that, the majority of them turn out just fine. So is there really a line to be drawn as to where to start treating a patient more closely??

Case in point, my pregnancy was everything BUT abnormal. I was pregnant with a singleton, which means I never would have even been considered as being a high risk patient. Didn't have any health problems what so ever. Yet at 24 weeks, pain in my abdomen left me bed ridden for a day. When it occurred a few days later, it landed me in the emergency room, with a 25 week preemie to boot.

It's fine to say that any person carrying multiples needs to be considered high risk from the get go. But that doesn't help those parents who are pregnant with just one when things suddenly take a turn for the worse.

I think that's where some of the responsibility needs to fall onto the parents themselves. I took it upon myself to acquire books and read things online. However, I skipped over every darn chapter/page that had anything to do with pre eclampsia, let alone HELLP. My doctor gave me books to read that outlined some potential problems with pregnancy, preterm birth, problems during delivery. I was foolish in thinking that "that isn't going to happen to me." And it was because my pregnancy was going so well that I felt confident that I didn't need to devour those materials.

So while we can scream that we want doctors to be more proactive and forth coming with information, I think it is just as important to look at the responsibility of the parent.

Anonymous said...

Helen Harrison to Terri w/2:

We're back from Hawaii, and, so far, I can't tell from my conference materials who sponsored the black tie dinner. MOD? AAP?

I have mixed feelings about all this. A great deal of important networking goes on at these events.

We attended a much more modest celebration in honor of Dr. William Silverman that was, I believe, sponsored by the AAP. There, I enticed one of the neos to check out "The Preemie Experiment" on his blackberry. We'll see where this leads.

Other neos are also reading this blog now as a result of such networking and may soon be contacting us regarding what we wish we had been told in prenatal counseling about prematurity, neonatal intensive care, and caregiving options.

But, back to MOD. I went to an excellent session by the winners of the 13th Annual March of Dimes Prize in Developmental Biology.

The two prize winning researchers, Drs. Philip Beachy and Clifford Tabin, spoke on the so-called "Hedgehog" genes that guide the formation of organs during embryonic and fetal development.

The genes are called "Hedgehog" because the loss of their signaling gives embryos a prickly hedghog-like appearance.

To quote from the text in the conference program "The gene's protein signals play a crucial role in how cells organize themselves in the body forming the brain, spinal cord, axial skeleton, and other organs. For example, these signals are involved in why the heart is located on the left and not the right side of the body, why we have two eyes and nostrils instead of one (and there *are* babies born, tragically, with only one eye and nostril), why the thumb is different from the little finger, and why different types of neurons form in specific locations within the spinal cord."

The gene's signals (or lack thereof) may be involved in various disease states including cancer.

This is really important stuff, I think, and it may be that March of Dimes will play a more important role in curing cancer (as a result of such research) than in lowering the preterm birth rate.

The important ways to lower the toll from prematurity, I think, have more to do with politics than with science -- limiting IVF (as mentioned above)and stopping elective C-sec (which often results in the delivery of sick,immature babies). Then, MOD needs to make sure parents have information and options going into a preterm birth situation. This, in my opinion, is where MOD is seriously dropping the ball.

I think we parents need to act as metaphorical "Hedgehog" genes and help MOD develop a proper political spine.

Helen

The Preemie Experiment said...

This comments in this topic could have gone the other way... thank you to all who have been respectful of others feelings!!

Helen wrote: "I think we parents need to act as metaphorical "Hedgehog" genes and help MOD develop a proper political spine."

I love it Helen!!

Kristie McNealy said...

"The genes are called "Hedgehog" because the loss of their signaling gives embryos a prickly hedghog-like appearance."

OK, why didn't anyone ever mention that part in my embryology course?? At least that would have stuck in my head.

This is shaping up to be an excellent discussion. I think it's clear that more education is desperately needed during all parts of this journey. Docs just don't seem to be hitting the mark anywhere, either before ART, during pregnancy, or in/after the NICU.

Sad.

-Kristie

Anonymous said...

Helen Harrison to Kristie:

And then there are the Hedgehog variants including Sonic Hedgehog (named for the game character) and one called Tiggywinkle after the Beatrix Potter character.

And, yes, the docs need to level with the parents, early and often!

Helen

23wktwinsmommy said...

TOTALLY off topic here, (again), but I just watched Discovery Health and had to come here and share.
It showed a (then) 26 year old man, Derek Paravicini, blind, developmentally delayed, autistic, who is a musical savant. My first thought, which almost came out of my mouth to DH was: "I wonder if he was a preemie?" Sure enough, a few seconds later they showed the tell-tale picture...a tiny infant in an isolette. According to Derek's dad, he was born 3 1/2 months premature, and had a twin sister, but she did not survive. Discovery Health went on to explain Derek's condition. He was blind because he was given too much oxygen in the early weeks of his birth (didn't use the term ROP) because that facility didn't have the equipment to monitor how much oxygen he was getting. Not a completely accurate depiction of ROP, because as far as I know we are still experimenting with how much O2 is too much and whether we can say with 100% accuracy that ROP is caused solely from too much oxygen and not from the extreme prematurity as well, but ok. Then it went on to say that his developmental delays were also a result of too much oxygen.

Of course the show was about Derek's severe developmental delays, blindness, and autism, and yet his extreme gift of music and ability to play the piano. It also tried to explore the inner workings of his brain to try and uncover the mystery of the savant.

But I couldn't stop thinking about the way they described his birth experience. Why the focus on too much oxygen, as if had he been given the "right" amount of oxygen he would have been fine.
If you knew nothing of prematurity you would have been led to believe that there was a deficit in this particular hospital; that Derek's condition was the result of a hospital that didn't have the appropriate equipment to monitor the right amount of oxygen. This is the way they portrayed it.

Although I found the show fascinating, I was a little disturbed by the lack of information provided with regard to his premature birth.

Discovery Health is also guilty of showcasing HOM and their quirky families, without *truly* getting into the realities of premature birth in general, and the aftermath of such births. They do touch on it at times in certain shows, but there is also a glorification of HOM, such as Jon & Kate plus 8, without any real regard for portraying how extremely rare it is that all survived and are developing normally.

Sorry to be off topic, but see how I tried to tie it back to topic in the end? :)
P.S. some of you may have seen Derek Paravicini on 60 minutes, I vaguely recall seeing him on 60 minutes, but didn't have the "preemie connection" at that time so his birth story didn't stick out like it did when I saw this show.

Kristie McNealy said...

to 23weektwins mommy:

Back before surfactant, O2 was more of a problem for preemies. 26 years ago, we didn't have artificial surfactant. For some babies, all they could do was crank up the O2 to 100% and pray. That definitely causes problems.

-Kristie

Kristie McNealy said...

@ Helen Harrison

LOL. I knew about sonic, but I must have skipped the day they talked about Tiggywinkle!

Anonymous said...

Helen Harrison to Terri w/2:

I'm still unpacking the various conference materials, and I just found a news release dated May 5, 2008 headlined: "March of Dimes Awards $250,000 Prize to Leaders in Understanding Embryonic Development"

Below, the text states: "The March of Dimes Prize...will be awarded to Dr. Beachy and Dr. Tabin at a gala black tie dinner and ceremony at the Moana Surfrider here" [Waikiki].

Sounds like the dinner was indeed funded by MOD.

I'll have more to say about the conference presentations as time permits, but I'm heartened to see that some of the docs are talking about a "preemie phenotype" aka "the preemie syndrome" we've all been discussing and elaborating upon for decades now. Unfortunately, the syndrome seems to include a lot of autism.

More to come...

Helen

future of hope said...

23weektwnsmommy said: "Not a completely accurate depiction of ROP, because as far as I know we are still experimenting with how much O2 is too much and whether we can say with 100% accuracy that ROP is caused solely from too much oxygen and not from the extreme prematurity as well, but ok."


I can attest to the fact that ROP is certainly not just an O2 problem. My son was on fairly low concentrations of oxygen even on the vent, and on pressurized "room air" (via CPAP) by 8 days old. He developed stage 3 with plus/rush disease in both eyes. Despite treatment, his rt eye progressed to stage 4b, requiring a scleral buckle.

Anonymous said...

Helen Harrison
to 23 week twins mommy and future of hope:

This is a really complicated issue as you both have pointed out.

There are preemies who develop ROP even on room air.

Intrauterine oxygen levels are normally extremely low (fetal pulse oxygen saturation is about 43%) but after delivery, preemies' sats rise rapidly to 80 to 90% or higher.

However preemies are not equipped with a well-functioning anti-oxidant defense system to counter-act the toxic effects of oxygen, and they may experience oxidative stress even at relatively low oxygen sats.

I also think flourescent lighting exposure plays a role. A large randomized trial that seemed to vindicate light as a culprit in ROP was not, IMO, well-conducted since the infants were not randomized until well after delivery and some potentially major light exposure in the delivery room and NICU.

Helen

SB said...

Helen said: Other neos are also reading this blog now as a result of such networking and may soon be contacting us regarding what we wish we had been told in prenatal counseling about prematurity, neonatal intensive care, and caregiving options.

But, the study you just identified for us doesn't begin with the neonatologists. It is the OBs who are fertility specialists that need a wake-up call, Helen, which I'm sure you know.

SB said...

And, one more, if I may,


The important ways to lower the toll from prematurity, I think, have more to do with politics than with science -- limiting IVF (as mentioned above)and stopping elective C-sec (which often results in the delivery of sick,immature babies). Then, MOD needs to make sure parents have information and options going into a preterm birth situation. This, in my opinion, is where MOD is seriously dropping the ball.


I don't disagree with the first parts or even the last parts. As someone who technically had two elective c-sections, I take issue with the "stopping elective c-section" remark. Having come a bit too close to dying with my first childbirth experience, I was not eager to repeat that, neither were the doctors or my husband. Surely there are others out there with a similar experience which would cause a problem if some law or rule were in effect limiting elective c-sections.

The Preemie Experiment said...

SB wrote: "I take issue with the "stopping elective c-section" remark. Having come a bit too close to dying with my first childbirth experience, I was not eager to repeat that, neither were the doctors or my husband. Surely there are others out there with a similar experience which would cause a problem if some law or rule were in effect limiting elective c-sections."

I can't speak for Helen but I can say, in my opinion, your c-sections would not be considered elective.

When I was pregnant with Paige my midwife (at my first appointment) asked me if I wanted to discuss any fears. I told her that I had an intense fear that I was going to need a c-section. I had known a few women who had major complications from the surgery and I was terrified. She went on to tell me that she had all 4 of her kiddos via elective c-section. It's been 9 years so my memory may be failing a bit but I remember her also saying that 2 of her kids were planned preemies-being born around 34-35 weeks.

In the 9 years since I've been a part of preemie communities, I've heard the story many times over. And, it's still happening. Docs want to deliver their patients before they leave for vacation so they schedule the sections early. Parents request it too.

The sad part of it all is that people think that late gestation preemies are simply a small version of full term babies. So very wrong!!!

Kristie McNealy said...

"The sad part of it all is that people think that late gestation preemies are simply a small version of full term babies. So very wrong!!!"

So well put, Stacy! As a mom of a late pretermer (36 wks), I had people tell me that R wasn't "really" a preemie. These people weren't micro preemie parents, these were medical professionals.

R went on to have a lot of oral motor problems, severe reflux and speech delay. She could never nurse well enough, and I had to pump.

I've experienced a 31 weeker, a 36 weeker and a 39 weeker at this point, so I understand that there are obvious differences between late preterm and having a NICU baby. The problem is that far too many docs (and parents) fail to acknowledge the fact that there late preterm babies are at risk too.

-Kristie

Anonymous said...

Helen Harrison to SB:

Sounds like your c-sections were totally indicated. However, as Stacy pointed out, a lot of mothers and doctors are very cavalier about doing C-Sec for scheduling and convenience.

There were a number of presentations at SPR on the significant dangers of late preterm births (34-36 weeks), both in terms of immediate need for NICU and resulting longterm handicapping conditions.

Since there are so many of these babies born, even the smaller percentages of them who end up disabled (compared to younger preemies) still lead to greater numbers with ongoing problems.

Parents, doctors and teachers need to know about potential problems with even a near-term gestation.

And I totally agree about the obstetricians needing to be the first line of detailed information for parents. But they are really resistant to this idea -- at least most I've talked with are. Neos, by default, end up being the only ones to talk to many parents. One of the neos I talked to at SPR -- who I believe is reading this blog right now -- wants to know what experienced parents wish they'd been told.

Helen

Kyrsten said...

Aaaargh, can you stand a little more on the issue of parental information and consent?

'Did some more research on pPROM --and can find very little on subsequent pregnancies in which the previous pPROM was not indicated... In the info. I did find, however, I realize that I was a classic case, and the doctors caring for me absolutely followed established protocol (with the exception of the use of tocolytics, which shouldn't have been considered particularly helpful, since I wasn't in labor).

In any case.

Every single article I looked at, from the generic to the scholarly, reinforced discussing possible outcomes with parents, from the risks of choosing to deliver immediately to the complications of waiting... Why the hell did they keep me 2 weeks, hoping to "go longer," when they knew the risks of infection? Why were we not given any options?

I didn't know that J. fell within a 40% fetal fatality margin, nor did I know that 80% of neonatal deaths are caused by pPROM complications. I cried when I read that my boy was one of less than 1% who develop sepsis, and that my pPROM must've been caused by my IVF twin pregnancy, because I had *absolutely no other risk factors.* None at all.

I'm edgy today because I'm going for my first ultrasound, and I'm seeing a new specialist. What I've been hearing from my OB, though, is that no matter how tough it may be to hear, we will never know why my pPROM happened and that she's not anticipating any restrictions on this pregnancy because there was no indication the first time, either-- so basically, who knows why it happened, and who knows if it's going to happen again?

I want answers! This sucks!!!

Anonymous said...

excellent post--where can I get an official copy of this study? or the original link, if possible?

Thank you
dm.osmond@gmail.com

mom of multiples said...

Bonjour,
you might be interested to read this. a lot of physician bashing here!! a bit to much...
It is about multiple births:
Annie Janvier. Jumping to premature conclusions. Virtual Mentor (AMA Journal of Ethics), Oct 2008, Vol 10, No 10; 659-64
http://virtualmentor.ama-assn.org/2008/10/pdf/pfor2-0810.pdf