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More Deaths For Caesarean Babies


gfp

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gfp Enthusiast

Well I'm putting this in chat since it affects so many different issues.

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More deaths for caesarean babies

Babies born by caesarean are nearly three times more likely to die in the first month than those born naturally, US research shows.

The findings, based on over 5.7 million births, are particularly important given the growing trend of women opting for caesareans, say the authors.

More than one in five of all British babies are now born by caesarean.

The Birth journal study included women with no obvious medical risks who had elected to have a caesarean.

Explanation

The researchers suggest that the process of labour helps prepare the baby for life outside of the womb.

As well as squeezing fluid out of the lungs, it may promote the release of hormones that encourage healthy lung function.

Dr MacDormac said: "Labour is an important part of the birthing process because it gets infants ready to breathe air and function outside the womb."

Professor James Walker, consultant obstetrician at St James's University Hospital in Leeds and spokesman for the Royal College of Obstetricians and Gynaecologists, said women should not be alarmed by the findings but should be informed.

"The absolute risk is still very small.

"But it should open people up to the fact that there are risks and benefits of everything. This is a relatively small risk but it is there and people need to know that."

Belinda Phipps of the National Childbirth Trust said: "I think that the study does need to be taken pretty seriously."

She said that earlier studies had already hinted that babies born by caesarean are more likely to experience breathing problems.

I'm sure this applies to lots of things from MSbP and cot death to celaics and childbirth.... so if a mod wants to move it fine, I just didn't know where to put it.

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Michi8 Contributor

Good article, but old news. This information has been reported many times since I had my first (unnecessary) cesarean section in 1998...and the cesarean rate has been climbing since:

November 15, 2005

The CDC reports:

Cesarean rate for 2004 is 29.1%

The rate is up from 27.6% in 2003

U.S. cesareans have risen 40% since 1996

First-time cesareans are at an historical high of 20.6%

VBAC rate fell to 9.2%

Since 1996, the VBAC rate in the U.S. has plummeted 67%.

The cesarean seciton rate in North America is astronomically high, and women are being encouraged to choose a primary cesarean birth in absence of medical need. What many people fail to realize is that it is major surgery, with all the risks of surgery. Plus there are serious additional risks for the baby. Many women are not properly counselled on those risks...there is a serious issue with a lack of true informed consent.

There is a North America-based organization, ICAN (International Cesarean Awareness Network,) whose mandate is to lower the cesarean section rate through education, and to advocate for mothers in this regard. They also advocate VBAC (vaginal birth after cesarean) as a proven, safe choice over ERCS (elective repeat cesarean section). Unfortunately, the medical model of birth is based on fear...fewer and fewer practitioners are willing to properly support women in their desire for VBAC...and fewer and fewer practitioners are willing to support a woman through a safe, natural primary birth.

Check out ICAN here: Open Original Shared Link.

Michelle

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gfp Enthusiast
Good article, but old news. This information has been reported many times since I had my first (unnecessary) cesarean section in 1998...and the cesarean rate has been climbing since:

November 15, 2005

The CDC reports:

Cesarean rate for 2004 is 29.1%

The rate is up from 27.6% in 2003

U.S. cesareans have risen 40% since 1996

First-time cesareans are at an historical high of 20.6%

VBAC rate fell to 9.2%

Since 1996, the VBAC rate in the U.S. has plummeted 67%.

The cesarean seciton rate in North America is astronomically high, and women are being encouraged to choose a primary cesarean birth in absence of medical need. What many people fail to realize is that it is major surgery, with all the risks of surgery. Plus there are serious additional risks for the baby. Many women are not properly counselled on those risks...there is a serious issue with a lack of true informed consent.

There is a North America-based organization, ICAN (International Cesarean Awareness Network,) whose mandate is to lower the cesarean section rate through education, and to advocate for mothers in this regard. They also advocate VBAC (vaginal birth after cesarean) as a proven, safe choice over ERCS (elective repeat cesarean section). Unfortunately, the medical model of birth is based on fear...fewer and fewer practitioners are willing to properly support women in their desire for VBAC...and fewer and fewer practitioners are willing to support a woman through a safe, natural primary birth.

Check out ICAN here: Open Original Shared Link.

Michelle

Of course, its babies to order... non of that inconveneice for the medical staff with the mother not making enough effort :ph34r: and deliberatly waiting till 2AM to have the baby just to spite them. With this they get the thing to order.

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CarlaB Enthusiast
Of course, its babies to order... non of that inconveneice for the medical staff with the mother not making enough effort :ph34r: and deliberatly waiting till 2AM to have the baby just to spite them. With this they get the thing to order.

:lol: When I had number 5, I had the epidural and it was the middle of the night. They called the doc, but he didn't show, called again, took forever. There was a resident there to deliver, but I didn't push. The nurse said she knew I wanted to push the baby out. I said that I really didn't care to till the doctor got there, that I had the epidural and I was waiting. I waited, he got there, finally. So, I guess I fall into the spiteful mom category! :lol: I figured the one making the money for the delivery should be present!!

I know the doctor lives close to the hospital ... when I had some complications a day later, it took him fewer than 10 minutes to show up at 10PM!!

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Michi8 Contributor
Of course, its babies to order... non of that inconveneice for the medical staff with the mother not making enough effort :ph34r: and deliberatly waiting till 2AM to have the baby just to spite them. With this they get the thing to order.

But they won't let the mother wait until 2am to have the baby! That's when they'll insist on an "emergency" cesarean (that you get prepped for an then wait forever to have.) Then there is the issue of cesarean section due to medical mismanagement of labour. There is a lack of informed consent when giving women epidurals too...many women do not realize that simply getting an epidural for labour increases their risk of ending up with a cesarean section.

I've got the experience of having medical mismanagement ending in cesarean section (x2.) Third time was a charm with having a homebirth VBAC. A wonderful experience supported by exceptional, experienced midwives. Wish all three of my births could have been like that. Best of all, recovery was a snap...unlike recovery from major abdominal surgery. :P

Michelle

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GFBetsy Rookie

I concur . . . recovery from vaginal birth is MUCH easier than recovery from a C section. And recovery from a natural (no drugs) birth is much easier than recovery from birth with an epidural. I've had all 3, and would so much prefer to do it the "natural" way. Of course, I have fast, hard labors, so when I did it naturally, I was only dealing with things for about 2 hours.

On the other hand, I really wanted to have my twins vaginally, but Baby A (the one who was closest to the bottom) flipped around and stuck her feet down there at 38 weeks. And when your first twin is in a breech presentation, they won't let you do vaginal birth because the twins' jaws could lock (which would create quite a problem). But, all things considered, I'm glad for the C section, because Baby B had the cord wrapped around her neck 3 times, and with my labors being as hard as they usually are, she might have died by the time I'd gotten her sister out of the way and then got her out, too.

But I'm definitely intending to try VBAC, for myself as well as for my baby.

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CarlaB Enthusiast

Mine were very prolonged labors ... the shortest was 24 hours. With that one I managed to go for 23 hours, but couldn't take it anymore!! Had I known it was only one more hour, who knows? As it ends up, it was heavily stained fluid and they were glad that I had the epidural so they could direct things more easily during delivery -- to suck the fluid out of the baby's lungs ...

I was told about the higher risk for c-sections (had 5, no c-sestions). I never had a problem, right after delivery, I'd tell the nurse I wanted to get up to use the bathroom, and I'd do it on my own. I know others can have difficulty with that -- the nurses each time would tell me it was impossible. I'd basically say, "Watch me, it's not impossible!"

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Fiddle-Faddle Community Regular

I've had 3--shortest labor was 18 1/2 hours, longest was 30 hours. I was VERY VERY lucky in that my OBGYN was very cool about letting me stay home until the contractions were about 3-4 minutes apart and too strong to talk through(which was still a good 4 hours before the baby was actually born). With #1, I pushed for 3 1/2 hours--and as long as I was willing to push and the baby wasn't in distress, nobody even hinted at C-section.

I've seen so many labors on "A Baby Story" where the doc comes breezing in after only a few hours and tells the mom that she's not making sufficient progress (usually after an epidural was started very early in labor and the mom is basically chained to the bed flat on her back)and NEEDS a C-section.

What drove me nuts was when the baby was practically jumping out--but the nurses yelled atme not to push because the doctor wasn't there yet. I remember saying, "I'm not pushing, the BABY'S pushing!" They really expected me to hold it in there til the doctor came. :ph34r:

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CarlaB Enthusiast
I've had 3--shortest labor was 18 1/2 hours, longest was 30 hours. I was VERY VERY lucky in that my OBGYN was very cool about letting me stay home until the contractions were about 3-4 minutes apart and too strong to talk through(which was still a good 4 hours before the baby was actually born). With #1, I pushed for 3 1/2 hours--and as long as I was willing to push and the baby wasn't in distress, nobody even hinted at C-section.

I've seen so many labors on "A Baby Story" where the doc comes breezing in after only a few hours and tells the mom that she's not making sufficient progress (usually after an epidural was started very early in labor and the mom is basically chained to the bed flat on her back)and NEEDS a C-section.

What drove me nuts was when the baby was practically jumping out--but the nurses yelled atme not to push because the doctor wasn't there yet. I remember saying, "I'm not pushing, the BABY'S pushing!" They really expected me to hold it in there til the doctor came. :ph34r:

Me, too, 3 hours pushing for the first.

None of my epidurals were started early, even for the ones that were induced. I didn't want to impede progress! Starting the epidural early is a prescription for a c-section! I can't believe they do it! It seems that docs prefer everything to be cut and dry. I remember someone's doc telling them to express the breastmilk and feed the baby out of the bottle so that they would know how much the baby was eating! I don't believe there were any health problems with the baby ... sometimes docs don't want to just let nature be in control.

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Michi8 Contributor
Me, too, 3 hours pushing for the first.

None of my epidurals were started early, even for the ones that were induced. I didn't want to impede progress! Starting the epidural early is a prescription for a c-section! I can't believe they do it! It seems that docs prefer everything to be cut and dry. I remember someone's doc telling them to express the breastmilk and feed the baby out of the bottle so that they would know how much the baby was eating! I don't believe there were any health problems with the baby ... sometimes docs don't want to just let nature be in control.

Starting an epidural at all can be a prescription for a c/s!

For me, my first c/s was due to breech presentation 3 days post dates...I didn't even labour...and I had a spinal. Second I laboured for a long time before augmentation and epidural. Because I was stuck on my back, my son was unable to move into correct alignment for birth...we both ended up with epidural fevers and had a c/s. My third birth was a typical "first birth": 13 hours of active labour (24 hours of labour in total) with back labour, 2.5 hours of pushing and a compound presentation birth (daughter's hand on her cheek.) My midwives were great for helping me get my daughter turned during labour (lunges on the stairs, hands and knees position & hip squeeze, etc) and were tough when I needed them to be. It would have been very easy to give up and go to hospital for pain relief, but we all knew that it would end in another unnecessary c/s.

Michelle

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covsooze Enthusiast

I would love to have had a natural birth, but DS's head was far to big :o However, when I was pregnant my bump was so small that they did a growth scan at 31 weeks to check DS was growing. The scan showed he was very big, with a big head, but they insisted on a natural birth. I went through the whole of labour (induced), screamed and screamed till they gave me an epidural and ended up having a c-section. The first words to greet DS were 'what a whopper'. Size wise, he wasn't vast (9lb 6.5) but he did have an enourmous head (at 3, it's almost as big as mine in circumference!) and he was never going to come out naturally. They should have been able to tell that from the scan and offered an elective c-section. Having gone through labour and a c-section, I developed post-natal depression and coeliacs. I wonder sometimes whether things would have been different if I'd had an elective c-section. I'll never know.

So...just wanted to look at it from another angle - my midwifery team were determined I should have a natural delivery but I ended up having to have a c-section. In fact, large heads run in the family and without a c-section, I wouldn't be here today myself.

If there's any indication at all that my next baby has a big head, I will want an elective section. However, my DH's family (all medical) are of the view 'once a section, always a section.' So I know I'll be under pressure to have a section come what may :angry:

Hmm...I'm rambling on :rolleyes: If no 2's head is smaller (assuming there is another Baby!) I will want a VBAC.

Just wanted to add...when mum had me by c-section, they put me in the special care baby unit and didn't let mum see me for 3 days, and expected her to express milk for me without even seeing me :o

Anyways, big heads aren't all bad...I heard about some research saying that if £ could be put into growing babies with bigger heads, the NHS's costs would be cut hugely as big heads are better all round from a health and development point of view :lol:

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Fiddle-Faddle Community Regular

I don't want to send you into an unnecessary panic, but I have read studies linking large head circumference with autism. Given your celiac history, you might want to be on the lookout for any signs of mild autism, such as lackof eye contact, lining things up over and over, not pointing or being able to follow your finger pointing, etc.

Hopefully, I'm being totally alarmist, and everything is just fine, especially 9if he is not eating gluten!

Oh--you might want to be careful about vaccines, too--definite link there, too, no matter wahat the pharmaceutical industry insists!

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gfp Enthusiast
I don't want to send you into an unnecessary panic, but I have read studies linking large head circumference with autism. Given your celiac history, you might want to be on the lookout for any signs of mild autism, such as lackof eye contact, lining things up over and over, not pointing or being able to follow your finger pointing, etc.

Hopefully, I'm being totally alarmist, and everything is just fine, especially 9if he is not eating gluten!

Oh--you might want to be careful about vaccines, too--definite link there, too, no matter wahat the pharmaceutical industry insists!

but Tony Blair say's they are safe! He wouldn't lie would he?

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covsooze Enthusiast
but Tony Blair say's they are safe! He wouldn't lie would he?

Good old Tone never lies <_<

Thanks for your concern, Fiddle-faddle, but DS shows no signs of autism, and big heads do run in both sides of the family. he is eating gluten though, and that I am not so sure about, but that's a whole other post.

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Michi8 Contributor

My children had good sized noggins as well, but that had no bearing on whether I had c/s's or not. The surgeon for my second birth said that my son was simply too big to come out (CPD)...which was bull$!&#. I went on to prove him wrong with an even bigger baby the third time 'round. My daughter's head was large, she was 9lbs 12oz, and with a fist on her cheek the head circumference was at least 0.5-1 inch bigger. No problems with her coming out, and virtually no problems for me...I needed no stitches.

Because heads are designed to mold, there is rarely a time when c/s is needed due to head circumference. A big factor in being able to birth the babies head safely is position. The lithotomy position (on the back) is the most ineffecient, and most dangerous in terms of damage to mom. Squatting or hands and knees (which is also a good positions rare cases of shoulder dystocia) can make delivering any size head easier.

Essentially, the human body won't grow a baby that's too big, and given the right birth position, the birth canal is designed to birth big babies. :) Furthermore, ultrasound during the last weeks of pregnancy is notoriously inaccurate for measurements (can be out +/- 3 pounds!) and cannot predict how well a head can mold. Regardless, VBAC is safer for both baby and mom in most cases. However I believe the mother needs to be comfortable with her choice of birth, and a mom that is not interested in the work needed to achieve VBAC (I had to work really hard on so many issues to finally achieve a VBAC!) or is fearful about trying should be able to select an ERCS.

BTW, both of my boys still have good-sized noggins (my eight year old wears the same size hat as me!) and have no signs of autism. My daughter was born big, but it's looking like she'll be petite like me (5'3".)

Michelle

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GFBetsy Rookie
My third birth was a typical "first birth": 13 hours of active labour (24 hours of labour in total) with back labour, 2.5 hours of pushing and a compound presentation birth (daughter's hand on her cheek.) My midwives were great for helping me get my daughter turned during labour (lunges on the stairs, hands and knees position & hip squeeze, etc) and were tough when I needed them to be. It would have been very easy to give up and go to hospital for pain relief, but we all knew that it would end in another unnecessary c/s.

Michelle

It surprises me that you had midwives that were willing to do VBAC after 2 c-sections. Here (in Utah) they won't let you do VBAC after 2 c sections because of the increased risk of tearing your uterus. Midwives won't touch you.

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2kids4me Contributor

and then there is the other side of the story - I have 2 friends where c-section was put off...for too long. In each case baby was born by emerg section - after the heartbeat had stopped. Both babies resucitated but have severe CP.

My own birth with first daughter was almost a tragedy - resident insisting everything was fine...but an alert nurse kept her eye on the fetal HR and was watching the decelerations increase with each push. Against the residents's wishes, she called the OB who had just come out of O.R and he pushed the resident away, did immediate episiotomy and forceps delvery - even with that she was only 4 on the Apgar and was rushed to ICU. An earlier intervention (either C-section of forcep) would have saved some heartache.

I read somehwere that C-sections went up for a number of reasons, one was the woman electing to have it and others where doctors afraid of lawsuits would rather do a c-sections early than wait til it becomes urgent.

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gfp Enthusiast
and then there is the other side of the story - I have 2 friends where c-section was put off...for too long. In each case baby was born by emerg section - after the heartbeat had stopped. Both babies resucitated but have severe CP.

My own birth with first daughter was almost a tragedy - resident insisting everything was fine...but an alert nurse kept her eye on the fetal HR and was watching the decelerations increase with each push. Against the residents's wishes, she called the OB who had just come out of O.R and he pushed the resident away, did immediate episiotomy and forceps delvery - even with that she was only 4 on the Apgar and was rushed to ICU. An earlier intervention (either C-section of forcep) would have saved some heartache.

I read somehwere that C-sections went up for a number of reasons, one was the woman electing to have it and others where doctors afraid of lawsuits would rather do a c-sections early than wait til it becomes urgent.

The new study is apparently the numbers reworked for elective C-section not medically advised and excluding other factors that skew it.

In the light of recent threads i thought it somewhat ironic that MSbP is somewhat defined by for instance cot deaths and it seems your at higher risk of cot death with a C-section!

Certainly it looks like of you have a history of respitory problems it might be something to take into account.

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eKatherine Rookie
Essentially, the human body won't grow a baby that's too big, and given the right birth position, the birth canal is designed to birth big babies. :)

Unfortunately it does happen, but not nearly as often as we are led to think.

When I was pregnant 24 years ago, I read studies about this same thing, and naysayers were raising questions about the ballooning CS rate even back then.

I had a natural birth with no anesthetic, just a little novocaine to sew up a small tear. I was very hard case.

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Michi8 Contributor
It surprises me that you had midwives that were willing to do VBAC after 2 c-sections. Here (in Utah) they won't let you do VBAC after 2 c sections because of the increased risk of tearing your uterus. Midwives won't touch you.

Unfortunately, the medical establishment has too much control over midwives, and in turn, too much control over a woman's choice over how and where to birth.

I live in Alberta, and there were no medical reasons to force me into a hospital. I had textbook recoveries from both my cesareans and had healthy pregnancies each time. The risk of uterine rupture is extremely small, and there are signs to watch for in terms of scar separation long before a rupture occurs. An undrugged mother will experience signs of pain during labour (and probably before labour) that would indicate a need to transfer to hospital. Note that induction with prostaglandins increases the risk of rupture, and should never be used during VBAC. Induction is never used in a homebirth. A VBAC is still a safer birth for both mother and baby than a repeat cesarean section.

Here is a fact sheet about c/s: Open Original Shared Link Here is a fact sheet about VBAC: Open Original Shared Link And an article about the risks of VBAC and risks of CS: Open Original Shared Link

Michelle

Unfortunately it does happen, but not nearly as often as we are led to think.

When I was pregnant 24 years ago, I read studies about this same thing, and naysayers were raising questions about the ballooning CS rate even back then.

I had a natural birth with no anesthetic, just a little novocaine to sew up a small tear. I was very hard case.

Yes, it can happen, but it's usually due to other medical issues such as gestational diabetes. Even then, I know of mothers who had 11 pound babies vaginally.

Michelle

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CarlaB Enthusiast
and big heads do run in both sides of the family.

My husband has a big head, he can never find a hat that fits. I joke with my daughters that they already have the big head gene, on the second date with a guy, they need to give him a hat ... if it's too small, it's the last date!! :lol:

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elye Community Regular

I'm in Ontario, where pretty much across the province our healthcare system is now deeply flawed. Our rate of C sections is also up considerably (I was lucky enough to have two great, uncomplicated natural deliveries) and the very worst part about this is the fact that because there's no money in our system, patients are being pushed out of the hospital FAR too early, often at great risk to their health. My girlfriend had a complicated C section last winter and was sent home 48 hours later. She ended up back in ER a week later...no surprise. This is a terrible state of affairs, and with C sections costing the government a whole lot more than a natural birth, it amazes me that our rate is so high.

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Michi8 Contributor
I'm in Ontario, where pretty much across the province our healthcare system is now deeply flawed. Our rate of C sections is also up considerably (I was lucky enough to have two great, uncomplicated natural deliveries) and the very worst part about this is the fact that because there's no money in our system, patients are being pushed out of the hospital FAR too early, often at great risk to their health. My girlfriend had a complicated C section last winter and was sent home 48 hours later. She ended up back in ER a week later...no surprise. This is a terrible state of affairs, and with C sections costing the government a whole lot more than a natural birth, it amazes me that our rate is so high.

I think that healthcare is flawed in most provinces. Alberta won't fund midwives, although the studies show they can save the healthcare system a lot of money. OTOH, when a woman hires a midwife here, her money works well for her, since the government has less say in what the midwife can and can't do. I had a less than positive midwife experience when I lived in BC...attempted a homebirth VBAC for my second birth, but the midwives weren't really acting in my best interest and were eager to move me to hospital when I found I wasn't comfortable staying at home. Then the cascade of inventions started. :( I believe the fact that they're gov't funded, and I had to agree to be a part of the homebirth study that the protocols they followed weren't truly favourable for VBAC.

In terms of recovering from c/s, the decision of when to go home should be looked at in a case-by-case manner. 48 hours may be too little time for returning home after a primary c/s, but 4 days felt like an eternity with my secondary c/s and I probably would have done better emotionally if I could have left after 2 days.

Michelle

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penguin Community Regular
Michelle

Yes, it can happen, but it's usually due to other medical issues such as gestational diabetes. Even then, I know of mothers who had 11 pound babies vaginally.

Michelle

My sister couldn't deliver vag. She's 5'2'', with a narrow pelvis. She had two 11lb babies, and never even went into labor with either of them, because they couldn't drop far enough. She never even dialated. She did not have gestational diabetes, we just have huge babies in the family. My grandfather was over 11lbs, and my brother's twins were 6lbs EACH (they were vag).

My sister did have one baby that was "normal" sized at 9 lbs, and even went into labor! She opted for the c-section, though. She wasn't supposed to get pregnant again, because the first two took such a toll on her body. The second one nearly broke her hip, and the third one gave her a hernia. She's just too little to have such giants. I'm not looking forward to pregnancy, I'm 4 inches taller than her! :blink:

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Michi8 Contributor
My sister couldn't deliver vag. She's 5'2'', with a narrow pelvis. She had two 11lb babies, and never even went into labor with either of them, because they couldn't drop far enough. She never even dialated. She did not have gestational diabetes, we just have huge babies in the family. My grandfather was over 11lbs, and my brother's twins were 6lbs EACH (they were vag).

My sister did have one baby that was "normal" sized at 9 lbs, and even went into labor! She opted for the c-section, though. She wasn't supposed to get pregnant again, because the first two took such a toll on her body. The second one nearly broke her hip, and the third one gave her a hernia. She's just too little to have such giants. I'm not looking forward to pregnancy, I'm 4 inches taller than her! :blink:

It's a shame that your sister's experiences would make you worried about pregnancy. Every person and pregnancy is different. A narrow pelvis is also not an indicator of a body's ability to birth, because ligaments loosen and are designed to stretch...I'm only 5'3" and have a narrow pelvis too, and had an almost 10 pounder with little trouble. The bigger issue for me was since I'm so short, I don't have a lot of room to carry big babies, and tend to have malpresentations (breech, asynclitic, compound presentations)...plus I get as big as a house during pregnancy. :)

Michelle

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    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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