Feeling sad and guilty

December 26, 2003

Hi All

Im having such a hard time with my son's plagio in terms of blaming

myself and feeling like I am so responsible. Since he also suffers

from the other one with a B- cant for the life of me remember how to

spell or even pronounce it- I feel like I caused him to have a

broader forehead then he may have had- He goes for his molding on

the 6th of Jan but the dr said the width factor will not change at

this point and that the helmut will only round out the back. It

would break my heart if kids teased him for something I caused

Im sure all of these feelings are normal but did you all feel this?

My friends and family dont really understand and dont see this as a

huge deal- I guess as his mom im having such anxiety about

EVERYTHING. Im just sad for him that he has to wear a helmut and Im

sure once we get past the molding and get him fitted it wont be as

traumatic of an experience on him as I am making it- What makes me

the most mad is that plagiocephaly was never even brought up in our

baby care class and both my husband and I had never even heard of

it! The pedi didnt even mention a thing until he was in for his 4

month check up-

Anyway thanks for letting me get some of this stuff out

Hope everyone is well

December 26, 2003

-

My daughter just got casted and started wearing her helmet in the

last 2 weeks. She is now 5 months old. I too, was very upset that I

didn't notice her flatness until she was 3 months old (she has a ton

of hair). I had heard of plagiocephaly as I used to work in a

children's hospital as a respiratory therapist. I just never

realized how common it was, and how easy it was for a baby's head to

mold. Raegan is a twin, and the doctor's believe her flat spot

started before she was born, but I still felt like I should have

caught it sooner, that the doctors should have checked more closely

knowing how little I am, and that I carried the Raegan and Kaelyn

until the 38th week. You are not the only one with feelings of

guilt. However, after the casting was done (that was the hardest

part for me), I realized this will all be over before she knows it.

She won't have memories of her helmet, only pictures to remind her.

As parents we want nothing bad to ever happen to our children, but we

do the best we can for them. Unfortunately, they will still get

hurt, and all we can do is be their loving support. I have had some

time to reflect this Christmas, and have realized that I am truly

blessed for 3 healthy children. None of my children have a fatal

disease that I will have to watch them suffer. If Raegan having

plagiocephaly is the worst thing that happens, I am VERY blessed.

Try to keep your chin up. The people in this support group are

great. I like that everyone looks after all of our kids and each

other. Take care, and good luck with the casting!

December 26, 2003

-

It's hard not to feel guilty at first, but you know that you are

doing everything for your little boy. My son also has brachycephaly,

and I also thought that he would have a wide, round head. After 7

weeks in the band, his head is looking great! I'm not sure if the

width has changed at all, but it really looks as if it has. His head

does look more narrow. Our family (as well as the pediatrician) also

just blew off my concerns, but they all are amazed at his progress,

and have agreed that it was the best thing to do. Just remember, the

helmet will be more of an adjustment for you, not for your son. You

will be amazed at how well he will adjust to it!

Good luck!

-Amy

mom to Brady, 9 months

DOC band 11/6

> Hi All

> Im having such a hard time with my son's plagio in terms of blaming

> myself and feeling like I am so responsible. Since he also suffers

> from the other one with a B- cant for the life of me remember how

to

> spell or even pronounce it- I feel like I caused him to have a

> broader forehead then he may have had- He goes for his molding on

> the 6th of Jan but the dr said the width factor will not change at

> this point and that the helmut will only round out the back. It

> would break my heart if kids teased him for something I caused

> Im sure all of these feelings are normal but did you all feel this?

> My friends and family dont really understand and dont see this as a

> huge deal- I guess as his mom im having such anxiety about

> EVERYTHING. Im just sad for him that he has to wear a helmut and Im

> sure once we get past the molding and get him fitted it wont be as

> traumatic of an experience on him as I am making it- What makes me

> the most mad is that plagiocephaly was never even brought up in our

> baby care class and both my husband and I had never even heard of

> it! The pedi didnt even mention a thing until he was in for his 4

> month check up-

> Anyway thanks for letting me get some of this stuff out

> Hope everyone is well

>

December 26, 2003

Oh ,

I felt the same way! How could I have done this to my boy! It was

heartbreaking. My children are 16 months apart, maybe I did not pay

enough attention to him. It was devastating! I did not sleep for a

month when we began this process. I was eating ham and cheese roll

ups and drinking too much wine! I was so angry and upset. The doctors

did not halp me! Guess what. JT finally got his band and it went

almost away. I realize that I may have made some mistakes (being

misinformed!!!!) but I am brave enough to face them and deal with it

now before it is too late. You are at the most difficult part of this

journey. Hang in there. I promise it will get much much easier. I

will keep you in my prayers. Happy Holidays. Kathy (mom to JT DOC

10/30 @9 months)