Question

November 29, 2000

on 11/28/00 1:56 PM, mwflagg@... at mwflagg@... wrote:

> Hi Everyone, Zachary (5) has been complaining his stomach hurts. He

> shows me his bellybutton and says it hurts there. Usually it's when

> he eats, but I've noticed he complains at other times as well. I've

> asked his ped. about it and she said he is probably constipated. I'm

> thinking that's not it. He has always had hard bms so why would he

> start complaining now? Has anyone got any ideas? Thanks in advance

> for any light you can shed on this one.

>

> Donna Mom to Zachary 5(charge) 8, wife to Matt

> NJ

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

Constipation has generally been the problem when my daughter has signaled

tummy pain (though over Thanksgiving, she had the opposite problem). She

didn't tell us about belly pain until she was fairly old. Martha

November 29, 2000

Hmm, does he point to the exact spot, I tend to get a lot of

intestinal cramping (since I was little) Is he also very gassy? I get

like this but I dont think its related to constipation eather, caues

I get it a lot.

Hugs

Chantelle

February 7, 2001

Cammy Eve -

I can understand alot of how the parents may have felt. When Sara

was diagnosed with CHARGE (several days after her heart defects

were diagnosed), one of the cardiologists spoke to us about her

situation. She needed surgery if she was to survive, but the first

option given to us was to not do have the surgery and just let her

go. That cardiologist said that she may likely be completely

blind and profoundly deaf, and she seemed genuinely surprised when

we decided to pursue the surgery and do everything possible for her.

Of course, we found this wonderful list inbetween which gave us the

hope and courage to evaluate things on our own. Since we had actually

spoken to the opthamologist and the folks who did the hearing tests,

we knew that the cardiologist's pessimism was not warranted and that

indeed Sara did have vision, hearing and was quite responsive. When

she didn't survive her surgery, it was a terribly blow to us and we

still miss her terribly.

Perhaps Tyler's parents were given an equally pessimistic diagnosis and

didn't feel that they had the resources to deal with it. We *knew* that

we had the resources and ability to handle a child with very severe

disabilities (we have friends who have children with severe disabilities,

so we already had some ideas about how difficult it would be but knew

that they were doing OK and could help us find additional resources).

I guess that we were also very lucky that Sara had absolutely wonderful

nurses who were willing to answer any of our questions, not be bothered

when we read Sara's chart (every day, cover to cover) and bonded with

her immediately and wanted her to make it too. We also had the internet

which we surfed every night to learn more about her defects and condition

so that we could make sense of what was in her chart. At one point, a

nurse who didn't know us well asked about our medical background (which

was a week of being in the NICU everyday -- she was quite surprised to

discover that we had learned so much in just one week).

Please be patient with them,

Debbie

PS I've been reading your posts and am very impressed with you.

From the keyboard of Cammy Eve:

> I guess this may not be considered a question, but maybe it is.

> Tyler had a visit with his parents (yah, even Dad showed up this time! this

> is a good thing)

> Mom and I did most of the talking and she thanked me for a letter I'd sent

> for her. Pretty much saying that Ty had settled in, what he's doing and that

> he's a happy, happy guy now. She then told me that's she surprised that he's

> doing the things he does, that the hospital told her and Dad that " he'll

> never even open his eyes! "

> WOW! Talk about shooting down a parents hope! This was during the very first

> days of Ty's life. I thought it cruel of the hospital to shoot them down

> like that! They're in their late 20's, maybe very early 30's. Blue collar

> people (just like my husband and I really!) Is that way other parent were

> treated? I felt so bad for these people! They weren't even given hope! I

> think parents need hope, certainly be honest, but there's always hope until

> everything has been medically tried. The hospital pretty much wrote Tyler

> off and made sure that his parents knew that.

> Then, I think this is what happened, the parents panicked and stayed away

> from the hospital and baby. When Mom came around, she was put out by the

> nurses (like they weren't very nice to her) and then she felt she didn't

> belong or wasn't wanted there. Which made it even harder to visit the baby.

> Does that make sense? Has anyone else been treated the was they were?

> I'm curios to hear.

> Take care, Eve

>

> P.S. Tyler is still gaggy, but the Ped Dr swears it's a flu bug. I did

> though manage to get a script for a MIC tube french 10. After I made him

> change the bandage and he realized what we go though 3X a week! When this

> tube rots, we can put the new one in. He says it can be done here in our

> little town. We'll see!

--

+=== Debbie Tropiano ==== Mommy to & ^Sara^ 10/25/00 - 11/7/00 ===+

| " Mom " to Nickie (the psychotic mutt) and Lusi (sweetie pup). |

| " Stepmom " to Piper (the sable sheltie) and Dawn (tri-black sheltie). |

+= debbie@... ==================== URL http://www.icus.com/~debbie/ =+

February 7, 2001

Eve -

We too were given the worst possible scenarios for our daughter Berkeley's

future. The head of pediatrics told me point blank that she would spend her

life lying in a bed and it would be kinder to take her home and wait for her

to die. How cruel!

Everyone form her Opthamologist to her Nuerosurgeon made a point of trying

to prepare me that she wasn't going to make it, and letting me know it would

be for the best. I give each of them credit for giving me the strength to

fight for her.

Berkeley is 20 months and doing incredible well. She is delayed

(functioning at a 10-12mo level), however she had a very rough start and

much of her first year was spent in the hospital. As everyone on the list

can tell you, doctors are not always right about these things.

I think it's wonderful that you have been so understanding of Tyler's

parents feelings and made such a point of keeping them informed. We were

fortunate to have lots of support from family and friends, and it made all

the difference in the world. It sounds as though you are filling this role

for Ty's parents.

Best of luck with everything.

Michele Hatfield

Question

> Hi all!

> I guess this may not be considered a question, but maybe it is.

> Tyler had a visit with his parents (yah, even Dad showed up this time!

this

> is a good thing)

> Mom and I did most of the talking and she thanked me for a letter I'd sent

> for her. Pretty much saying that Ty had settled in, what he's doing and

that

> he's a happy, happy guy now. She then told me that's she surprised that

he's

> doing the things he does, that the hospital told her and Dad that " he'll

> never even open his eyes! "

> WOW! Talk about shooting down a parents hope! This was during the very

first

> days of Ty's life. I thought it cruel of the hospital to shoot them down

> like that! They're in their late 20's, maybe very early 30's. Blue collar

> people (just like my husband and I really!) Is that way other parent were

> treated? I felt so bad for these people! They weren't even given hope! I

> think parents need hope, certainly be honest, but there's always hope

until

> everything has been medically tried. The hospital pretty much wrote Tyler

> off and made sure that his parents knew that.

> Then, I think this is what happened, the parents panicked and stayed away

> from the hospital and baby. When Mom came around, she was put out by the

> nurses (like they weren't very nice to her) and then she felt she didn't

> belong or wasn't wanted there. Which made it even harder to visit the

baby.

> Does that make sense? Has anyone else been treated the was they were?

> I'm curios to hear.

> Take care, Eve

>

> P.S. Tyler is still gaggy, but the Ped Dr swears it's a flu bug. I did

> though manage to get a script for a MIC tube french 10. After I made him

> change the bandage and he realized what we go though 3X a week! When this

> tube rots, we can put the new one in. He says it can be done here in our

> little town. We'll see!

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

February 7, 2001

Eve,

Just like the other parents here have mentioned, I too, was given the worst

case scenario. Perhaps this is something that doctors are taught to do, to

prepare us, but that of course doesn't make it right. I don't know. As for

the nurses - I was constantly battling with the nurses. Here and there I met

a really great nurse who was helpful, kind, and understanding. But for the

most part, we didn't get along. A friend of mine who works in a hospital

explained to me the reason for this. She said that the feud between parents

and nurses is that it is not clear who is the child's caregiver. Nurses feel

responsible (and more competent) to care for the child. Parents feel like

they have lost control and have had to turn over their child to strangers. I

did a short research study in graduate school on the positive effects of

parent-to-parent support in the NICU, which seemed to be a way to help

parents cope. I am also writing a book called " ...Just Not Right: A case

study curriculum for the preparation of personnel in early intervention. "

This is being written as part of my internship for graduate studies and

explains about the miscommunications between professionals and parents. When

Neal was just a couple of days old, I did the same thing - I started going to

the hospital less and less. Then when I would show up, the nurses treated me

like I was a bad mom. What they didn't realize was my need for distance, my

fear of getting too close to him and then losing him. The hospital is a very

intimidating place! It sounds like these parents are going through the same

thing. But be patient with them, and ask the nurses to be, too. This is

more than likely a phase that they are going through, a growing and learning

process. When your child is born with such complications, you have to accept

the death of a dream that you've had for nine months of sweet smiles, little

bows, and first steps. Not to mention the fact that the opportunity to bond

appropriately is very limited. Accepting this is often like accepting the

death of a loved one, and you have to go through a grieving process, which as

we all know begins with denial, then anger, then distance. Just keep

reminding them of how much their baby needs THEIR love, and he needs it more

than he needs anyone elses. In their own time, they will come back to him.

It would be so helpful it the medical staff was more understanding of the

process of coping and acceptance that parents must go through; unfortunately

they are not. Hope this helps.

Rosie (mom to Neal, 5 with CHARGE, and -Marie, 9 months)

North Carolina, USA

February 7, 2001

Hello,

Well my experience was just the opposite in the NICU. I had wonderful nurses

for our daughter and they were more concerned about how I was doing it

seemed. My daughter was transfered to another hospital 10 hours after

birth(Childrens NICU). I was at another hospital recovering from a c-section.

I had to stay for 4 days while my baby and husband were at another hospital.

The nurses took poloroid pictures of her and gave them to my husband to bring

to me. Of course they told him to tell me to call as much as I wanted but I

had a harder time doing that because I felt so bad that they(the nurses) were

caring for my daughter and not I. My husband stayed with her in the NICU from

morning til late at night, then back to hospital with me, then back to her in

the morning. As far as the Dr.s go, they never discouraged us, but we were

faced each day with more problems and told she would never see, or walk, etc.

I think they prepare you for what might be a worse scenario, but boy were

they wrong!

Maybe thats what they have to do, I dont know. But my experiences in the NICU

with the nurses were great, its just what came later on in the PICU that

wasnt so great!

Tia mom to age 12

February 7, 2001

Eve,

When my son, was born, not 1 doctor gave us hope. They all said he

would eventually die. If it was thios pneumonia, it would be the next. Thye

didn't know if we had 6 days, 6 months or 6 years but he's be dead by

then..... did die at 6 months of age but I hate the " what if's " .....If

we had known more, would he still be here? Honestly I am more on the side of

God knows our days before we are even born and would have died

regardless on March 21, 1997.... He went through heart surgery, stomach

surgery, nissen. all the life saving stuff and a doctor actually told us we

were just prolonging his death (in other words we wasted our time with all

the surgeries) Well I don't think we wasted anything. i cherish every moment

of the 6 months we had with and I always will be glad he visited us

here for his short time. He changed my life for the better.

As far as what the impression the docs made on me.....when my daughter

Jillian was born with CHARGE, I wouldn't even touch her for the first 2

weeks because of the fear of her dying. I had to be put on anti-depressantsa

just to bond with her. Shes' almost 3 now and a wonderful little girl.

Foley in Virginia

Mom to 5, (CHARGE in heaven) and Jillian 2 cHaRGE

Question

> Hi all!

> I guess this may not be considered a question, but maybe it is.

> Tyler had a visit with his parents (yah, even Dad showed up this time!

this

> is a good thing)

> Mom and I did most of the talking and she thanked me for a letter I'd sent

> for her. Pretty much saying that Ty had settled in, what he's doing and

that

> he's a happy, happy guy now. She then told me that's she surprised that

he's

> doing the things he does, that the hospital told her and Dad that " he'll

> never even open his eyes! "

> WOW! Talk about shooting down a parents hope! This was during the very

first

> days of Ty's life. I thought it cruel of the hospital to shoot them down

> like that! They're in their late 20's, maybe very early 30's. Blue collar

> people (just like my husband and I really!) Is that way other parent were

> treated? I felt so bad for these people! They weren't even given hope! I

> think parents need hope, certainly be honest, but there's always hope

until

> everything has been medically tried. The hospital pretty much wrote Tyler

> off and made sure that his parents knew that.

> Then, I think this is what happened, the parents panicked and stayed away

> from the hospital and baby. When Mom came around, she was put out by the

> nurses (like they weren't very nice to her) and then she felt she didn't

> belong or wasn't wanted there. Which made it even harder to visit the

baby.

> Does that make sense? Has anyone else been treated the was they were?

> I'm curios to hear.

> Take care, Eve

>

> P.S. Tyler is still gaggy, but the Ped Dr swears it's a flu bug. I did

> though manage to get a script for a MIC tube french 10. After I made him

> change the bandage and he realized what we go though 3X a week! When this

> tube rots, we can put the new one in. He says it can be done here in our

> little town. We'll see!

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

February 7, 2001

When Lexi was born she was in the NICU at Riley. The

doctor who made rounds, I think he was a

neonatologist, told my husband and I that she would

DEFINATELY die and to decide whether to take her home

and not feed her and let her starve to death or take

her home and wait for the inevitable or to leave her

there to die. Well he was wrong, along with the other

doctors who said this. She is 18 mos. only 1 more

heart surgery to go, I hope, and she is doing great

and now all the doctors are saying her prognosis is

very very good. So there Dr Trautman. Concerning the

nurses, they were wonderful except for one nurse. We

called her Nurse Ratchet, but she wasn't there very

often. Thank goodness for small blessings.

__________________________________________________

February 8, 2001

Eve,

I found sometimes they were OVERLY negative to us about Kennedy's prospects with no way of knowing things at that point. I also found that during our first long hospital stay (the first almost 4 months) that the nurses kind of tend to "take over" your child and leave you feeling like you shouldn't even be touching them. I had to be REALLY agressive and let them know this was MY child even though she was not well at the time and that I would be doing the preponderance of her care even though she was in THEIR hospital. They got the picture pretty quick, but I did notice a lot of shy parents kind of sitting off in the back watching the nurses care for their babies (even general bathing, etc) and I can see where they might get that feeling.

Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/kawfolksICQ #1426476

Question

Hi all!I guess this may not be considered a question, but maybe it is.Tyler had a visit with his parents (yah, even Dad showed up this time! this is a good thing)Mom and I did most of the talking and she thanked me for a letter I'd sent for her. Pretty much saying that Ty had settled in, what he's doing and that he's a happy, happy guy now. She then told me that's she surprised that he's doing the things he does, that the hospital told her and Dad that "he'll never even open his eyes!"WOW! Talk about shooting down a parents hope! This was during the very first days of Ty's life. I thought it cruel of the hospital to shoot them down like that! They're in their late 20's, maybe very early 30's. Blue collar people (just like my husband and I really!) Is that way other parent were treated? I felt so bad for these people! They weren't even given hope! I think parents need hope, certainly be honest, but there's always hope until everything has been medically tried. The hospital pretty much wrote Tyler off and made sure that his parents knew that.Then, I think this is what happened, the parents panicked and stayed away from the hospital and baby. When Mom came around, she was put out by the nurses (like they weren't very nice to her) and then she felt she didn't belong or wasn't wanted there. Which made it even harder to visit the baby. Does that make sense? Has anyone else been treated the was they were?I'm curios to hear.Take care, EveP.S. Tyler is still gaggy, but the Ped Dr swears it's a flu bug. I did though manage to get a script for a MIC tube french 10. After I made him change the bandage and he realized what we go though 3X a week! When this tube rots, we can put the new one in. He says it can be done here in our little town. We'll see! _________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com."5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

February 8, 2001

Eve,

I also was given the " worst case " scenario when Saleah was born. They told

me that because she had bilateral colabomas that she would not be able to see

without very strong perscription glasses and other doctors told me that her

brain was the size of a baby born at 36 weeks rather than 40 so she would be

severely retarded and because of the loss of oxygen at birth it caused brain

damage, others said she wouldn't walk until she was 5 and that was the " best

case " because more than likely she wouldn't walk at all. They had said at 2

weeks that she'd be on heart medication until her surgery, and everyone just

had a real grim outlook on things. This was the most devestating news I had

EVER gotten in my life and I was doing this by myself. Her father left a few

days after I got pregnant (even though we had planned it) and I knew he would

never be there for her. Now I was a single mom at 25 with a 7 year old and a

baby who needed my care 24 hours a day. I don't know how I got through all

of that and still managed to take care of my son (who was 7 at the time).

I would love to show the doctors what she has accomplished. She sees very

well (even without her glasses she can pick up a small piece of fuzz off the

floor). She has no brain damage and is as smart as a whip. She was off

heart meds before she even left the hospital at 4 weeks. She started walking

this past August and now I can't keep her down. She has been delayed in

some things and that was to be expected because she's had such a rough start,

but I get so angry sometimes when I think about what the doctors had told me

and what if I'd have given up on her then. I think doctors feel the need to

prepare you for the worst, but sometimes it does more harm than good.

Although I think it gave me a little extra push to really focus on her

disabilities and get her the services she needed and work with her constantly

to get her to do things they said she wouldn't do.

Kim

mom to Devin 10 yrs. and Saleah 2 1/2 yrs. (CHARGE)

February 9, 2001

I sent this earlier today, but I don't think anybody got it because it never

showed back up in my inbox.

Kim

In a message dated 2/8/01 12:36:17 PM EST, kef11721 writes:

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