Re: IUGR

August 3, 2004

We found at 32 weeks gestation Skye was small. We were sent to the

Mayo Clinic for tests. They could find nothing wrong (except the

size of the baby) and the placenta was smaller then normal. At 32

weeks the estimated size was 3 lbs 12 oz. (about 16% range) BUT a

week before birth an ultrasound measured her at 6 lbs 4 oz and

another 5 lbs, 14 oz. At birth she was 4 lbs 11 oz. The doctor

thought the assymetry was throwing off the number. (at 14 week

ultrasound all was normal and on time)

I was also very careful to eat right during pregnancy and get enough

rest. Not until we got the RSS diagnosis did I feel the guilt lift

of maybe I did something wrong to cause her small size. We had every

test under the sun done up at the Mayo Clinic. And when I could

finally see pictures of other RSS kids on the internet I could see

the similarity in the physical features to further prove to me the

RSS diagnosis is correct. And I can finally believe I did not cause

this.

August 3, 2004

We had Alyssa's cord and placenta tested as well. However, she only had a 2

vessel cord and a very sickly placenta. It was horrible. Only part of it

was functioning, so I too look forward to the day when what causes RSS is

known. I originally thought due to the placenta it was environmental,

however at the convention I learned the placenta is baby made not mommy made

so. . . it started with her.

Dayna

IUGR

> I have been reading the latest postings on the whole IUGR thing. I

> just wanted to add in my two cents, whether it will help or not, I

> don't know. But, we found out at 20 weeks that was small for

> gestation. His head was measuring pretty close to his gestational

> age, but the rest of his body lagged considerably. When I discussed

> this with my OB right afterwards, I asked if he would be a dwarf, she

> thought not since his limbs where proportionalte to his body, it was

> just his head was larger in proportion. I was sent to a specialist

> and they thought he would have Trisomy 18 based on what they where

> seeing in the ultrasounds. But, I did want you all to know, that

> they did extensive testing on me and . First of all, during

> some of the NUMEROUS ultrasounds I had while I was pregnant, they

> would look closely at the cord, and note the blood flow through it.

> I had a THREE vein cord, and he was getting what he needed through

> that based on the u/s. Also, immediately after I had , they

> took the cord and the placenta and sent it directly to a lab. They

> shipped it to somewhere that specializes in testing these things.

> They determined that indeed the cord was conducive to a healthy

> pregnancy, and the placenta was more than substantial for a healthy

> baby. So, I have yet to know what did go on, but to me that just

> points to genetics, and not the pregnancy environment. He had plenty

> of nutrition available to him, but there was just something else that

> hindered his growth. Anyone else have a similar situation? Anyone

> else have the testing on the cord and placenta after birth? I wish

> we could know for sure what the cause is. Maybe someday!

>

> Jodi R.

>

August 3, 2004

Dr. H asked if there was any pathology done on the placenta but my

OB didn't do any. Our problem was instead of the cord attaching in

the middle it was about 5 " from the " edge " ..it's called marginal

placenta..I have carried so much guilt because there was a night I

had a few too many glasses of wine before I knew I was

pregnant..even though they say it's not our fault I can't help but

feel a little guilty.

Mimi

August 3, 2004

Just to add my two cents, I have twins. Now, they are fraternal,

but, only has RSS and does not. We did the in vitro

thing and I was monitored the entire pregnancy. If I had done

something wrong, both children would have been affected, not just

one. I had a million sonagrams, including a level 2 sonagram. All

they knew was that Baby B () was smaller than Baby A ()

by a lot.

Judith, Steve, (RSS) and (non RSS) 4 1/2 year old twins

August 3, 2004

My point to my post earlier, which I forgot to add, is that there was

nothing that we did as moms, and carriers of our baby, that caused

the IUGR/RSS babies. I am a spokesperson for the model pregnancy. I

took prenatal vitamins months and months before I got pregnant,

because I knew we would be trying again soon. I also stopped

drinking caffiene at that same time, and I would have to be having a

SEVERE migraine headache to even take ONE Tylenol!!! I am one of the

paraniod ones that puts nothing that could remotely put my baby at

risk into my body while I was pregnant, and even a period before I

became pregnant. So, Mimi, pplease stop doing this to yourself.

Your " few too many glasses of wine " had nothing to do with Isaac's

problems! I can promise you that much. I mean, if it was, then what

made turn out the way he did. It is nothing like that. It is

genetic, and I believe it doesn't even have to do with the mechanics

of the pregnancy. Some people may have had a less than condusive

environment, but mine was not. And, if that is the case, then

should have been a perfectly healthy growing baby. They found

nothing wrong with his womb environment.

I have also wondered, and I think I have mentioned it here before, if

RSS could be a carrier gene, like Down Syndrome is. Some people can

be carriers, but not have the syndrome. Some can show some signs,

but not have the full effect of the syndrome. Just my crazy mind

working overtime I guess! ) But, I have some of the trademarks

that our RSS kids have. For example, I have the cafe au lait spots,

and the curved pinky's, and I was born at 5 lbs. 3 oz. with a lazy

eye, which a few of our kids have presented with. Also, my oldest

son has the same features as I do, but his pinky's are even more

curved than mine, and he has a good many more cafe au lait spots,

too. Do any of you have the similar thoughts or situations? Any of

your other children have some of the features. It could mean

absolutely nothing, but I was just wondering about the carrier thing.

Jodi R.

> Dr. H asked if there was any pathology done on the placenta but my

> OB didn't do any. Our problem was instead of the cord attaching in

> the middle it was about 5 " from the " edge " ..it's called marginal

> placenta..I have carried so much guilt because there was a night I

> had a few too many glasses of wine before I knew I was

> pregnant..even though they say it's not our fault I can't help but

> feel a little guilty.

>

> Mimi

August 3, 2004

Jodi,

You bring up some interesting points. I also have curved pinkies and

a few cafe au lait spots, but I'm 5'8 " . But by my family's heights,

I am the smallest by several inches and I was also a tiny baby in

comparison (6lbs.8oz vs. almost 10 for my sibs). My father is 6'6 "

and my brother 6'5 " , my sister is 6' and my other sister is 5'11 " .

I am a twin mommy and I do believe something may have happened in

utero. Dr. H's crowding speculations seem to ring true for so many

of us multiple mom's on here. It is so weird how it always is the

boy who is affected in the boy/girl twins on this listserve like

maybe it is hormonal somehow?

Colin & Hayden - 12.6.00

Grant - 12.30.03

> > Dr. H asked if there was any pathology done on the placenta but

my

> > OB didn't do any. Our problem was instead of the cord attaching

in

> > the middle it was about 5 " from the " edge " ..it's called marginal

> > placenta..I have carried so much guilt because there was a night

I

> > had a few too many glasses of wine before I knew I was

> > pregnant..even though they say it's not our fault I can't help

but

> > feel a little guilty.

> >

> > Mimi

August 3, 2004

Jodi R.

I had a similar experience with Storm. Everything came back from the

labs normal. the only difference is that the cord was SMALL. It had

all three veins and was perfectly normal other that the size of it.

It was about the size of a pencil! (very small) but then Storm was

also only 4 pounds at full term, so it was okay relative to his size

I guess. It was at about 30 weeks that we discovered that he was not

growing due to ultra sound and his head was at 30 weeks, but his body

and femur were at about 25 weeks. So we also were sent to a

specialist once a week for the duration of the pregnancy! He just

told me I needed to lay around and be lazy and eat! Hello, I am good

at that!!! It didn't make a difference. Also, It couldn't be due to

the size of the uterus or anything considering my daughter was 9

pounds 2 ounces at birth 42 weeks gestation! 2 weeks late!

Anyhow, just thought I would share!

Carmen, mom to a bunch of kids! and wife to a great man!!

August 3, 2004

Jodi R-

You have such AMAZING strength and compassion..in the midst of all

your struggles you are reassuring me! What a wonderful world this

would be if there were more people like you..

Mimi

August 3, 2004

Hi,

Emerence was diagnosed SGA at the conference. Our our relationship

with our level 2 Obgyn started very early...we started with twins,

lost one at about 11 weeks, then her placenta ruptured slightly at 12

weeks, then we found out she had a 2 vessel cord, then came the

diagnosis of IUGR and possible dwarfism at 20 weeks. We immediately

were sent to see the (so we are told) number 1 ultrasound specialist

in the US (she writes most of the books ultrasound measurements are

guided by) and she couldn't rule out dwarfism except any major

forms. I have to mention though when our normal level 2 guy (who we

saw about 15 times!) told us the baby might be a " little person " I

went home and for the first time in 6 months my son wanted to watch

Snow White and the 7 Dwarfs and then at 2 am I got up, couldn't

sleep, and turned on the tv and there was a talk show about dwarfs!

I was pretty sure at that point that someone was telling me to just

get used to it - Emerence was going to be short!

The placenta was tested and it was apparently fine.

Now, however, I am beginning to wonder if Emerence has the

uniparental disomy RSS...(she has asymmetry, curved finger, high arch

mouth, large forehead, hypotonia, slight eating issues compared to

everyone else). My son has cafe au lait spots (she doesnt') and has

severe hypotonia. He is small for his age but usually 10% or above

for height and weight. So I think he is fine even with these few

issues.

However, she is going to see her endo, genticist and a ortho in

September so we will see how she is growing then.

> I have been reading the latest postings on the whole IUGR thing. I

> just wanted to add in my two cents, whether it will help or not, I

> don't know. But, we found out at 20 weeks that was small

for

> gestation. His head was measuring pretty close to his gestational

> age, but the rest of his body lagged considerably. When I

discussed

> this with my OB right afterwards, I asked if he would be a dwarf,

she

> thought not since his limbs where proportionalte to his body, it

was

> just his head was larger in proportion. I was sent to a specialist

> and they thought he would have Trisomy 18 based on what they where

> seeing in the ultrasounds. But, I did want you all to know, that

> they did extensive testing on me and . First of all, during

> some of the NUMEROUS ultrasounds I had while I was pregnant, they

> would look closely at the cord, and note the blood flow through

it.

> I had a THREE vein cord, and he was getting what he needed through

> that based on the u/s. Also, immediately after I had , they

> took the cord and the placenta and sent it directly to a lab. They

> shipped it to somewhere that specializes in testing these things.

> They determined that indeed the cord was conducive to a healthy

> pregnancy, and the placenta was more than substantial for a healthy

> baby. So, I have yet to know what did go on, but to me that just

> points to genetics, and not the pregnancy environment. He had

plenty

> of nutrition available to him, but there was just something else

that

> hindered his growth. Anyone else have a similar situation? Anyone

> else have the testing on the cord and placenta after birth? I wish

> we could know for sure what the cause is. Maybe someday!

>

> Jodi R.

August 4, 2004

Jodi,

I told you before there were many similarities between & . What

you

wrote in this message is almost word for word what I would describe happened

with

, though we found out about 's IUGR at 18.5 weeks. Down's

Syndrome

was also suspectec by a specialist, and I had an amnio which proved this wrong.

I was

having 3 sonograms per week in my last few weeks of my pregnancy which ended at

28

weeks. The only thing I am not sure about was the cord. They concentrated a

lot on the

blood flow through the cord during the ultrasounds, and when was

delivered, the

cord was very thin & fragile. However, the placenta pathology was normal.

There was no

astonishing news that came back from the lab regarding the cord & placenta.

Kim C.