Re: SIDS / LYNNE

[Guest guest]

Lynne,

I really feel like you are being a little hard on some of our people. The

people in this group are generally very supportive and kind. The woman that

spoke of her friend with a baby that died of SIDS was simply sharing a heart

wrenching story. For you to come back with an accusatory and sarcastic post

was really uncalled for. This group has prided itself on NOT allowing

ugliness and rudeness to prevail here and we will continue with that

tradition one way or another. Please consider the feelings of others in this

group before putting up posts. I would appreciate your consideration of this

request. All of us here have been through the good, bad and ugly of plagio,

but no one here would take allowing our babies to die from SIDS over a flat

head. Please bear in mind that we are a SUPPORT group.

Thank you,

Marci (Mom to )

Oklahoma

Group Co-Moderator

[Guest guest]

GOD, I HOPE you aren't telling your friend this!!! It is NOT her

fault! Go on internet and look up SIDS ALLIANCE OF THE CAROLINAS.

There you will read that SIDS deaths occur EVEN TO BABIES ON THEIR

BACKS! There is no answer to preventing SIDS because they don't know

the cause but they are linking it to chemical differences etc... in

the brain, read site I told you about. Don't do this to your friend!

With my son, I'm sure when he goes to doc we'll be told it's not that

bad and time will correct it which is what doc at Phila. Children's

hospital said though as a mother I see it as bad. As far as your

friend goes, it takes more than sleep position alone for SIDS to

occur! Site I told you of also has help for families going thru grief

due to loss of a child with SIDS. Maybe you can read this and be of

help to her but DO NOT tell her it was her fault! Lynne

> Dear lynne:

> I am very glad to hear that you have not ever had a situation with

> SIDS or know anyone that has. My son was diagnosed with plagio at

> one month old and only because I had noticed the flatness right

away

> (it was utero). I was lucky that my ped was willing to say that

ahe

> had no idea and sent us to a specialist. He has been wearing a

> helmet for three months now (he is five months old) and the

procedure

> is almost fully corrected. My best friend also had a baby three

> months behind me and from observing the situation I had to go

through

> with my son the casting, the awkwardness to the intial wearing of

the

> helmet and the stares in public along with the questions she had

> decided to try the side method afraid of her daughter getting a

flat

> spot. Well my point is three weeks after this little angel was

born

> she had passed away from SIDS! My girlfriend is devasted she will

go

> through the rest of her life blaming herself for the cause of the

> passing of her only child. So yes I would have to say I will

> definitely take any flatness or any plagio anyday if it would

prevent

> my child from passing away do to SIDS! This would have been her

only

> childs' first Christmas if she did not listen to other people tell

> her there is no real danger of Sids by placing her child on her

side

> I know if she had not done this we would be celebrating Xmas

together

> with both our kids. She no longer comes to my house everyday for

it

> is way too hard for her to see my son! I thank God everyday for my

> sons' plagio because at least he is here for me to see it. I asked

> my specialist about your situation and she said that at two years

old

> the only possiblity is surgery! Sorry to bring such news close to

> Xmas but I honestly feel before you go on a campaign you may want

to

> get all the facts and maybe talk to a families that has had a loss

> with SIDS!

> Merry Christmas

[Guest guest]

Lynne:

Just to let you know, your posts are now being moderated. You are still welcome to post to the group, but only helpful/appropriate posts, or messages asking for help will be passed on to the entire group. You will still have access to the group's information.

It really bothers me when members take personal jabs at other members, and I feel you have done that today. This is a support group. We SUPPORT each other here. We do not criticize others actions or comments.

I wish your family well.

Kendra G

Group Owner

Re: Re: SIDS / LYNNE

Lynne,I really feel like you are being a little hard on some of our people. The people in this group are generally very supportive and kind. The woman that spoke of her friend with a baby that died of SIDS was simply sharing a heart wrenching story. For you to come back with an accusatory and sarcastic post was really uncalled for. This group has prided itself on NOT allowing ugliness and rudeness to prevail here and we will continue with that tradition one way or another. Please consider the feelings of others in this group before putting up posts. I would appreciate your consideration of this request. All of us here have been through the good, bad and ugly of plagio, but no one here would take allowing our babies to die from SIDS over a flat head. Please bear in mind that we are a SUPPORT group.Thank you,Marci (Mom to )OklahomaGroup Co-ModeratorFor more plagio info

[Guest guest]

Thank you for sharing that tragic story. My heart and deepest

sympathy goes out to your friend & her family.

Debbie Abby's mom DOCGrad

MI

> Dear lynne:

> I am very glad to hear that you have not ever had a situation with

> SIDS or know anyone that has. My son was diagnosed with plagio at

> one month old and only because I had noticed the flatness right

away

> (it was utero). I was lucky that my ped was willing to say that

ahe

> had no idea and sent us to a specialist. He has been wearing a

> helmet for three months now (he is five months old) and the

procedure

> is almost fully corrected. My best friend also had a baby three

> months behind me and from observing the situation I had to go

through

> with my son the casting, the awkwardness to the intial wearing of

the

> helmet and the stares in public along with the questions she had

> decided to try the side method afraid of her daughter getting a

flat

> spot. Well my point is three weeks after this little angel was

born

> she had passed away from SIDS! My girlfriend is devasted she will

go

> through the rest of her life blaming herself for the cause of the

> passing of her only child. So yes I would have to say I will

> definitely take any flatness or any plagio anyday if it would

prevent

> my child from passing away do to SIDS! This would have been her

only

> childs' first Christmas if she did not listen to other people tell

> her there is no real danger of Sids by placing her child on her

side

> I know if she had not done this we would be celebrating Xmas

together

> with both our kids. She no longer comes to my house everyday for

it

> is way too hard for her to see my son! I thank God everyday for my

> sons' plagio because at least he is here for me to see it. I asked

> my specialist about your situation and she said that at two years

old

> the only possiblity is surgery! Sorry to bring such news close to

> Xmas but I honestly feel before you go on a campaign you may want

to

> get all the facts and maybe talk to a families that has had a loss

> with SIDS!

> Merry Christmas

[Guest guest]

I will have to admit to not being strong enough to even read this story,

the thought of losing a child in such a way is just too horrible. One of my

wife's emplyees lost his two week old son last week to SIDS, and without

even meeting them I couldn't hold back the tears for their loss. Our childrn

are our lives. To the concept that anyone would 'cause' SIDS is absurd, but

we all know that as parents ANYTHING that happens to our children we burden

upon ourselves. Our hearts go out to your friend, and we hope she can find a

way to forgive the powers that be for writing this chapter in her life.

When was born he was very thin and had a terrible time keeping food

down. They told us it was reflux, gave him a Zantac prescipton, and sent him

home in two days. We continued the labor of feeding him for 3 more days. He

would sleep a few hours, wake up crying weakly, try to eat; Mom

breastfeeding while I sucked up the fluid that would come out of his nose.

By the fifth day of his difficult life we took him to the pedi. He'd lost a

pound of his birthweight (5-11 to 4-11), was dehydrated, and his body temp

was falling. When the lactation consultant saw what was happening she

whisked from us to bring him to the doctor. We were rushed to the

hospital, where after 24 hrs and every test imaginable they determined

's esophogus dead ended at his trachea(trachial esophogial fistula), no

food had made it to his belly from the time he was born, but he had

aspirated a lot of milk and stomach acids since his belly did connect to the

trachea also. The misdiagnosis nearly killed him and as first time parents

we listened to everyone that said, " Oh, my baby did that, it's normal. They

get what they need! "

Two weeks later finally came home after major surgery and several

near death experiences at the hands of the Children's 'Ward'(If your child

is ever hospitalized;stay with them 24-7, question every person that comes

in the room, and NEVER let them do something you are uncomfortable with. Do

not be embarassed to drag a nurse to the room if they don't respond fast

enough!) When we see those home movies of him when he came home the first

time- we're laughing and talking to him trying to get him to eat- it makes

us sick. Our baby was starving to death in our arms and we had no idea. If

we'd put off taking him in one more day, he'd never had made it. His surgeon

and the few 'good' nurses couldn't believe they'd missed such stereotypical

symptoms, and no one ever heard of a baby living 120 hrs without

nourishment. I'm filled with self-loathing just thinking about it, but it

wasn't our fault!

And then the plagio...like most everyone here we'd never heard of it.

Did we DO IT to him? Yes! We laid him to sleep on his back, we put him in

his swing, drove around in the carseat/carrier. But we did it to protect him

against a more horrid trauma, and without the knowledge we should have had.

The only mentioning I heard for side sleeping in all the parenting classes

we took was to prevent tort, nothing more. Not one mentioning of Plagio. If

you drink the tap water and find out later that it's contanimated, does that

make you irresponsible? No, just misinformed.

The only people that have the right to point any fingers at plagio

parents, or any others that have children that suffer from maladies brought

about by poor public information or acts of nature beyond their control is

the parents themselves. It's a personal battle, whether it is right or

wrong,and for anyone outside of that family to think ill of or condemn a

well meaning parent needs to look into themself and find what it is they are

guilty of. I do not aim this remark at anyone, merely point out the obvious

to the masses of parents here who feel guilt for their children's condition

and to those who don't understand what we are going through.

The air is thin up on this soapbox, I'd better get down.

Thank you all again for your advice! Our insurance co is claiming 'out of

network' so I'm desperately looking through last weeks post for that

standard appeal form I'd seen mentioned. Oh, and for those who haven't gone

through it yet I'll post a set of pics from 's casting (it's not as

awful as you'd expect...)

--

Joe O'Connor

's Pop

streams2oceans@...

Charlotte, NC USA

[Guest guest]

Thank you for taking this action. It was starting to

get a little frustrating checking the posts wondering

what agression would be unleashed next.I am very

grateful to have found this group and want to express

my sincere thanks to all the other parents for their

wonderful support. Happy Holidays to all!

--- Kendra <p-nutsmum@...> wrote:

> Lynne:

> Just to let you know, your posts are now being

> moderated. You are still welcome to post to the

> group, but only helpful/appropriate posts, or

> messages asking for help will be passed on to the

> entire group. You will still have access to the

> group's information.

>

> It really bothers me when members take personal jabs

> at other members, and I feel you have done that

> today. This is a support group. We SUPPORT each

> other here. We do not criticize others actions or

> comments.

>

> I wish your family well.

> Kendra G

> Group Owner

>

>

>

>

>

>

> Re: Re: SIDS / LYNNE

>

>

> Lynne,

>

> I really feel like you are being a little hard on

> some of our people. The

> people in this group are generally very supportive

> and kind. The woman that

> spoke of her friend with a baby that died of SIDS

> was simply sharing a heart

> wrenching story. For you to come back with an

> accusatory and sarcastic post

> was really uncalled for. This group has

> prided itself on NOT allowing

> ugliness and rudeness to prevail here and we will

> continue with that

> tradition one way or another. Please consider the

> feelings of others in this

> group before putting up posts. I would appreciate

> your consideration of this

> request. All of us here have been through the

> good, bad and ugly of plagio,

> but no one here would take allowing our babies to

> die from SIDS over a flat

> head. Please bear in mind that we are a SUPPORT

> group.

>

> Thank you,

> Marci (Mom to )

> Oklahoma

> Group Co-Moderator

>

>

[Guest guest]

Joe and Family,

You really expressed yourself very well in your post- I can only imagine what you all have had to deal with. My son has torticollis- a stiff neck muscle, which is hardly life threatening, but we have had our share of "nurses"- and "Docs" if that's what they were- give us the run around too, like so many other members on this board. At least when you look back upon those first days, you were a loving family that wanted only the best for your and he will see that and feel that. The fact that he was not dx until 5 days after birth is not your fault, you are not trained to spot these things, but your Docs should have. Accountability seems very rare for most Docs, they seem to take the attitude that these things happen. Which really angers me because, that is there job, to ensure the best health care possible. Anyway, don't get me started on my soapbox! Wishing you all the best and good luck with helmet therapy, it really worked out well for our and I'm sure you'll see great results with too!

' Mom