One aspect I found interesting was that the blame game has shifted a bit. The March of Dimes is notorious for ads depicting the cause of prematurity to be maternal smoking, drugs and lack of prenatal care. In this article, however, the finger is being pointed in other directions. Maternal age, rise in c-sections, in vitro, A.R.T (assisted reproductive technology) are all mentioned.
Dr. Alan Fleischman, medical director for the March of Dimes, comments,
"There's been a change in the way we practice obstetrics," Fleischman says.
That change, ironically, is partly due to lifesaving technologies developed to save preterm infants, Fleischman says. These have made many obstetricians feel that they've succeeded if a woman doesn't deliver before 34 weeks and that babies are more or less out of the woods by that point in the pregnancy.
This belief has lowered doctors' trigger points for performing an elective induction and cesarean delivery before a fetus has reached full term. If a pregnant woman is experiencing minor difficulties (or sometimes if she is simply feeling uncomfortable), some doctors will deliver the baby prematurely thinking that it is better for the baby to be in the neonatal intensive care unit than the womb.
"The problem is, they haven't taken into account that even late-preterm infants often have bad outcomes," Fleischman says. These babies suffer some of the same immediate problems that more premature infants experience, and often struggle with subtle developmental problems later.
"Getting to term should be the goal," he adds. "We don't want to stop one medically needed early delivery. But many elective inductions and cesarean sections would benefit from more careful consideration."
29 comments:
Thanks for this post! I am not surprised, though. I need a repeat c-section for medical reasons, and my doc (who I really respect) refuses to schedule the c-s any sooner than 1 week before EDD (i.e. at 39 weeks), even though DD came full term at 37 weeks. I've been getting some pressure from family to try to get the date moved up for various reasons, but safety (for me and baby) is my most important concern. After reading your blog, I feel really secure in having detailed data to push back against my (well meaning) relatives who just don't know any better.
I also wanted to give a big thank you to you and your commenters. I found your blog when looking for information to help a friend whose just about 3 year old 23 weeker "looked normal" and escaped physical issues (except glasses). My friends are upset (of course) because she didn't catch up by 3 after their neo and NICU told them she would catch up by 2-3, and if she escaped physical issues, she might have some learning disabilities "like dyslexia".
They feel betrayed and unhappy, because their precious girl only has 6 words at 3 years old. They think it is their fault--no one ever told them about the full range of cognitive problems micropreemies commonly have. They thought her feeding/eating issues were the only marker she would have after her ordeal, and they got this way from the info they were given by their neos. I am thinking about how to help them best (other than to provide support), given that I now know a lot more about what they might be in for. Any advice on how to gently lead them to the knowledge they will need to plan for the future that their docs aren't sharing?
I am also glad to hear that the blame is being shifted. I did everything right in my pregnancy- no soda, not even a hotdog and I still ended up with a micro preemie and at times, especially immediatly before and after the birth when the docotors are taking your history several times you get the did you smoke/drink/take recreational drugs questions and I know I for one got a lot of out loud comments of "mother denies use" with the ephasis on denies. Its horrible when you did absoultly nothing to cause your childs prematurity to feel like people re blameing you for it. It's hard enough to deal with your own sence of guilt without adding others on top of it.
To anonymous above: I know your friends are well past the newborn stage, but I found the book "The preemie Parents' companion" by susan Madden to be very helpful and informative on the entire preemie process including indepth expinations of the problems preemies face after the NICU as they grow. I wish you friends the best of luck in their preemie journy.
When I was admitted to L&D at 23.2, my mom was with me while Edwin had to go train (it was Olympic Qualifying time and we really didn't realize how serious my situation was.) They told me to ask my mom to leave the room...so I did.
I thought they were going to ask if Edwin and I had been intimate in our pregnancy, which we had because we were cleared by our high risk OB to do so...Instead, they asked if I had taken drugs in my pregnancy. I said not in my pregnancy and not ever. They asked if I would consent to a drug test! Of course I agreed, but couldn't help feel the blame was on me, even though I know they were just doing their jobs. It sucked though, to think people wondered if I had poisoned my babies.
Maybe there is a shift in the blame, but there are still a lot of unanswered questions for the many who do not fall in the reasons listed by the MOD. I still makes us terrified to have more children, given my healthy pregnancy up until that fateful day...
As for the first commentor, the information the *some* neos aren't sharing, is that *nearly* 100% of micro preemies I have come to know have SOME lasting impact, and many have several. There are some who do not, but on average, there are many health and development related impacts, and I believe the neos need to make parents aware that this is not an easy road and they must be committed to parenting a child who is medically and developmentally needy. Preparing yourself for what could happen is easier than expecting things will be "normal" by age three. I think it's totally unfair to tell parents that. The NICU follow up team has been honest with me about what they are seeing (and they only follow until age 3) and said the old belief that preemies catch up by 3 is for the 30 plus weekers (even still an unfair statement) and certainly does not apply to micropreemies.
My children are so special and so loved, but they are not typical in the least, and probably never will be. As a parent, you have to be ok with this. You have to be willing to let go of what you thought parenthood would be about. It doesn't give you much time to think as you are being rushed to a c-section, so I agree with what Stacy has done here to try and get people thinking about this BEFORE it happens. I was lucky enough to have a NICU team who didn't lie, or make me think things would be "normal."
Knowing what I know makes me thankful for the issues we don't deal with, and made me emotionally prepared for a lot of what my kiddos have been through. Expecting that things would NOT be typical has really helped me. We hope for the best, count our blessings, but don't turn a blind eye to the issues. It's what works for us.
How nice it is to finally hear this point of view coming out. I always hated MOD's focus on prenatal care for the self-centered reason that it had nothing to do with me or why my babies arrived early.
Also funny, I was trying to articulate this point about late-preterm infants to some friends last night and I totally failed. They were advocating for a mutual friend to be induced at 37 weeks...all I could manage to mutter was that it seemed like it'd be a bad idea to deliver any earlier than necessary!
Thanks for the post, Stacy!
Stacey in CA
I too am glad that the MOD is finally broadening their approach to preventing prematurity. Like most of the others here, what the MOD had previously been focusing on had nothing at all to do with my own DD's prematurity.
I fear the damage has already been SO done by the MOD. .most people are absolutely clueless about prematurity, 'cept to say that moms on drugs have preemies. Just recently my hair dresser who is pregnant told me that a good friend of hers who is a NICU nurse told her that the majority of preemies in her unit are a result of drug abuse. I told her that this was not true, that most preemies are born that early for unknown reasons, or due to being a part of a multiple birth. She, of course, didn't believe me.
Nice to see that the MOD is finally broadening their campaign. Nice also to see that they are acknowledging that preemies actually survive (gasp) with developmental disabilities.
I'm also glad to see they are finally starting to admit to why the rise has been so steep in premature births.
After my labor/delivery experience my OB thinks the next time around I'll have to go with a scheduled c for fear of the damage the abruption and emergency c caused to my uterus. Sh discussed scheduled c but thankfully wouldn't do it until 39-40 weeks.
Does anyone have any data or studies on outcomes for late preterm babies (36 weeks and later)? I have seen studies that lump together 32-36 weekers, but nothing beyond that. A lot of people do think that once you get to 36 weeks you're good to go, and I'd like to see what the research shows to the contrary.
Anonymous wrote: "Any advice on how to gently lead them to the knowledge they will need to plan for the future that their docs aren't sharing?"
Maybe you could tell them that you have read, on many sites, that preemies do not catch up by age 2/3. This might cause them to search on their own.
I've been exactly where you are at... people asking me for info when they may not be ready to hear it. The messenger is never the good guy in this situation.
terri w/2 wrote: "Nice to see that the MOD is finally broadening their campaign. Nice also to see that they are acknowledging that preemies actually survive (gasp) with developmental disabilities."
I was honestly surprised by the article. I think even more could have been said but it's a beginning. Now let's see what they do next.
As for issues surrounding late term gestation preemies... My son (35.4 weeker) had reflux that was very severe-much worse than Paige's (25.5 weeker) ever was.
Future generations of late gestation preemies will benefit from the research relating to reflux. We had a heck of a time getting docs to listen to us. Tyler was happiest when he was eating. I think it soothed his throat from the pain of reflux. He would scream until we fed him. So that's what we did.. fed him. He was huge when I finally figured out that it was reflux.
Can you imagine the doc when I walked in with this enormous boy and told them that he had reflux? He rolled his eyes. I insisted on getting an upper GI. He agreed but I could hear his thoughts. lol
The upper GI was done and stopped immediately because the reflux was so severe. The radiologist didn't want him to swallow anymore barium. He xrayed his lungs to make sure he hadn't aspirated any of the barium.
Ty was started on meds and we saw an improvement quite fast.
If you are a parent of a late gestation preemie and they are having feeding issues, please mention the possibility of reflux to your doc.
Anonymous wrote: "Does anyone have any data or studies on outcomes for late preterm babies (36 weeks and later)?"
I don't know of any study that singles out 36 and 37 weekers but I'll keep looking. If anyone does know of any studies, please feel free to post them here.
"I don't know of any study that singles out 36 and 37 weekers but I'll keep looking."
Thanks. I'll keep checking back here. The reason I'm asking for this gestational age is that this when the early c-sections are done, and when a lot of people think it's no problem. Let's find out what the real consequences are.
I just brought home my 37/5 weeker (!!!!), and I am beyond thrilled that my OB watched me carefully but pushed to keep him "cooking" as long as possible.
[Very briefly, previously I had twins born at 28 weeks due to pPROM at 26; one son died due to a myriad of complications.]
Of course, our preemie "experience" changed my outlook on so much; my family's viewpoints on a lot of things, too...
I've actually had friends avoid me because I expressed upset that they chose their baby's early birthdate (and this is more than one couple!).
And yes, a lot of friends/acquaintances say, "well, Joshua (my survivor) is OK!" Then I get lectured because when I explain some of his health problems --or things he could face in the future-- I hear that I'm a pessimist.
I can't believe people are willing to risk so much.
Krysten said "I can't believe people are willing to risk so much"
I feel like a broken record, but I firmly believe that the environment created by hospital public relations committees, neonatologists (remember the 21 weeker born in Florida, or the 9 ouncer born in Chicago), and the biggest offender of all. .the March of Dimes and the so-called "miracle babies" is why most people do not take prematurity very seriously. The average person thinks that if a baby is "saved" that they will be "normal". .most people, even fellow nurses do not realize that the majority of disabilities in the newborn period are NOT congenital (born with) but acquired disabilities d/t prematurity and neuro damage acquired in the NICU.
We're going into Christmas week, and I'm sure there will be an abundance of "miracle baby" stories out there, as usual. These things are extremely impactful on the average person. Newspapers, hospitals and the MOD should be required to do a followup story on these kiddos 10 years down the road.
THEN, and only then, will people's perception of prematurity actually change to take this as seriously as it should be taken.
Helen Harrison writes in:
I've just come back from the Hot Topics in Neonatology conference in DC, and "late preterm infants" (LPI) were a main topic.
Apparently, almost all of the recent increases in the preterm birth rate are due to LPIs and the increase in Cesarean delivery, some of it elective to suit the schedules and incomes of docs and mothers.
Obstetricians and the public seem to have received the message from neonatologists that preemies are no big deal because they are all doing "so well," and late preemies -- heck, they're a piece of cake, not to worry!
However, these children, it is now being discovered have a much higher rate major problems (than FT infants)both in the short term and in the long term.
The rate of breathing and feeding problems is high. Also jaundice. And since the brain is only 2/3 of what it will be at fullterm (40 weeks) many brain development malfunctions can occur. The rate of special ed and learning disabilities, as well as CP and psych probles, is high among these children.
There is enough evidence, some think, to reclassify 37 weeks as preterm, but this would be hard to do since the definition has been set by the World Health Organization.
It is not clear how many of these late preterm deliveries could have been prevented, but c-secs for anything other than serious maternal/fetal health issues should be discouraged, according to the docs who presented.
Helen
Helen,
I would love to get some info about brain development and delays in 32 weekers from you. My own research hasn't come up with nearly as much as I know is out there.
Could you help me?
Regarding later-term preemies, a friend's sister had a son who was born weighing just over 4 lbs, and around 1 month early. It may have been a month and a half.
This child is now six, significantly smaller than his two younger brothers, has learning difficulties in school, and he's hyperactive.
Helen Harrison writes:
After Christmas I'll try to summarize the slides that were given in the presentations at Hot Topics by Alan Jobe, Gabriel Escobar, and Hannah Kinney on late preterm infants and 37 weekers with references to puiblished studies on the epidemilogy of late preterm infant outcomes, mortality in late preterms, CP/brain injury in late preterms, rehospitalization rates in late preterms, and respiratory problems in these infants and children.
Just as soon as the presents are wrapped and all the Christmas cards in the mail.
Helen
My mom was a pregnant smoker of 5 and had 5 perfectly healthy newborn babies with 4 of them under 7 pounds and 1 baby boy weighing 7 pounds. I never smoked a cigarette in my life, have never done drugs and I am not a drinker. But for some reason I had severe morning sickness, stomach pains that made me cry when I ate and then developed severe maternal anemia. Lilike was never in distress in the womb, never distressed in labor. Was the average birth weight for a term newborn.
Of 7 pounds 1 ounce and length 49.5cm. With apgars of 7 and 9. And still came out a sick newborn. I will never know why. But I do know 1st pregnancies can turn out to be high risk because its the 1st time a womans bodyy has to try and handle a pregnancy and handing over all nutients to both the baby and to mom. Thanks to early intake of iron tablets at 5 weeks with Locke and 9 weeks with Anjeni we had 2 healthy newborns. Locke 7 pounds 4 ounces 50 cm, and Anjeni 7pounds 13 ounces, 52cm.
I'm late getting here due to dealing with my late gestation preemies' on going issues...
I've got a 33 weeker with Aspergers - the dxing specialist said was due to his prematurity as we have absolutely no family history.
I've got a 36 weeker who did NICU time with ADHD - again no family history so more likely than not to be due to his prematurity. He's been a major issue lately with behaviour problems and juggling meds...the games continue
And then I've got a 3 1/2 year old 36 weeker with a significant speech delay - they think a processing problem and HUGE eating problems due to severe reflux which he's had since about 3 days old. Just this week we've scheduled him for a nissen and g-tube in early Feb because of on-going reflux pain and virtually nil weight gain over the past 9 + months.
So Stacy, thank you sooooo much for this - the more info that gets out there that late term prems are NOT a cake walk, are NOT homefree, and are NOT going to automatically free of on-going problems the better!
And the reflux issue is really important - all my 3 have had or do reflux. The eldest had on-going apneas because of it - we're talking up to the age of 3 years and big eating, weight gain problems; my second wound up having a nissen done aged 6 years because of reflux vomiting and despite meds the surgeon found significant inflamation and adhesions in his oesophagus, and my third - well, reflux has wrecked havoc on him.
People think of it as a 'laundry problem' but it can almost kill a child - My third was tube fed for a while as an infant because of severe FTT due to his reflux, and now we're going to have to put a g-tube in.
I had the surviving triplets at 25 weeks. Both have autism. One high functioning, one low. I delivered my daughter at 37 weeks due to my creeping blood pressure, constant contractions and borderline diabetes. She was 9 pounds. She's typical.
My next twins came at just under 37 weeks, scheduled. I was not in labor but my BP was creeping up. I remember sitting on the table waiting for the spinal and wondering if I should wait a week. 7 pounds 9 ounces adn 6 pounds 2 ounces. Both have autism. One high functioning, one low. Would a week have made a difference> I always wonder. The littler one acted somewhat like a preemie, wanted to sleep through feeds. He's the lower functioning one.
Helen Harrison writes:
Now that Christmas is over, I can get back to the late pre-term issues I started writing about earlier.
There is an excellent article on the new evidence regarding late preterm infants in the December 23 issue of the Wall Street Journal.
The link is http://online.wsj.com/article/SB122999215427128537.html
The main points are these:
--every week in pregnancy matters for brain, lung and liver development
--with every week from 32 to 39 weeks, there is a 23% drop in respiratory distress, jaundice, seizures, temperature instability, and brain hemorrhages.
-- a study of 15,000 children born between 32 and 36 weeks had lower reading and math scores in first grade than children who went to term
-- new research shows late preterm infants have higher incidences of mild cognitive and behavioral problems, and lower IQs than term children
--the two week margin of error for obstetrical dating means that some babies thought to be 36 weeks are actually 34 weeks
--ACOG and MOD are urging OBs not to deliver before 39 weeks unless there is a very good medical reason
--nearly 75% of preterm infants are born between 34 and 36 weeks, many by c-sec; it is not clear how many of these births were avoidable
--making families and docs aware of these risks (as has recently been done in Utah) can greatly reduce elective delivery before the 39th week (in Utah the rate went from 27% to 5% with education)
More to come.
Let me know if the link doesn't work. I am a subscriber to WSJ online and am not sure if they let others read their articles for free.
Helen
Helen Harrison writes:
Here are some of the references on late preterm infants that were given at the latest Hot Topics in Neonatology:
Chyi et al. School outcomes of late preterm infants: Special needs and challenges for infants born at 32 to 36 weeks gestation; J Pediatr (Journal of Pediatrics)2008;153:25-31.
Petrini et al. Increased risk of adverse neurological development for late preterm infants. J Pediatr 2008. (see website of J Pediatr for the rest of this reference)
Actually, rather than having me type out all these citations, it might be easier for those who are interested to go to the Journal of Pediatrics website and do a search there on "late preterm infants."
A wealth of info is available at this one journal alone.
Helen
Helen
This is astounding that "late term infants" are getting this kind of attention, yet neonatologists appear to be in such denial about problems in extremely preterm infants - what the heck?
On an aside. . .the NICU in our area has apparently launched a new TV ad - I heard about it from several people, but have yet to see it. From what I've heard from these people the ad states "no care is too extreme for your baby" or some such nonsense. Ugh. Of course, everything is rosey in preemieland. . .and, the general public has no clue as to what "extreme" can really mean.
Helen Harrison writes:
To Terri w/2:
*Please* tell this to: change.gov
I think all the recent emphasis on late preterm infants, while *very* important, is still a bit of a diversionary tactic by the neos and MOD -- a sort of "back and fill" to make their own horrible outcomes with ELBW look better in perspective.
We need to keep the focus on the ELBW infants.
And, in fact, Hot Topics threw a sop in that direction. We had a presentation showing that "Epicure 2"(more recent ELBW babies <26 wks in the UK) have the same bad outcomes--percentage wise -- as the earlier group whose outcomes have been reported on this blog. In other words, no progress except perhaps in survival= more severe handicap.
This is not sustainable, or humane!
Helen
Re:
"Late Pre-term":
It's actually horrifying how the terminology shifts over time.
I needed a repeat, scheduled C-sec 9 years ago, and was told that at 37.5 weeks, my son was considered 'full-term'. (8.5 lbs birthweight, by the way.)
He was re-hospitalized for jaundice, had terrible reflux, and took over 3 months to learn how to breastfeed normally, which,to me, was an alarming sign of some motor/neurological immaturity.
At age 9, he has numerous psychiatric difficulties.
He has had several rounds of occupational therapy for balance and muscle tone issues, although he has hit all development milestones, something has always been 'off'.
I have always thought that he could have used a few more weeks in the womb.
To Anonymous 4:25,
Were you given steroid shots at any time during the third trimester to help "mature" the baby's lungs?
This might also contribute to the problems you describe.
But prematurity -- and I am now convinced that 37 weeks is not "done" yet -- could also be a major contributor to your son's problems.
Helen
to Helen:
No steroid shots--the irony is that this was a scheduled C-sec, with absolutely no medical reason for the timing, other than doctor's scheduling--and that I was assured that 37.5 was a normal time-frame for a scheduled c-sec.
If I was doing it today, I'd have pushed it to the edge, that's for sure.
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