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In a message dated 7/21/2003 12:57:39 PM Central Daylight Time,

jeninca1010@... writes:

>

> I have a particularly strong point of view about this issue and I am

> sure others will disagree. I feel that it is selfish and cruel on

> the parent's part to bring a child into the world knowing it will

> suffer. Our son was 11 weeks premature, has had 3 surgeries on his

> intestines, has scars on him from IV's, etc. If someone really wants

> a child and they can't afford IVF with PGD, then look at foster

> children or adopting. That is my brief opinion. We are doing IVF

> with PGD starting in September. We are lucky that we can afford it.

> If we couldn't, we would be looking at adoption.

Well, I totally disagree with this!! Every time anyone has a baby there is a

risk that something could be wrong with there child!! There is No guarantees

with any pregnancy I say go for it you have a 1 and 4 chance!!! Deb A

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I have a particularly strong point of view about this issue and I am

sure others will disagree. I feel that it is selfish and cruel on

the parent's part to bring a child into the world knowing it will

suffer. Our son was 11 weeks premature, has had 3 surgeries on his

intestines, has scars on him from IV's, etc. If someone really wants

a child and they can't afford IVF with PGD, then look at foster

children or adopting. That is my brief opinion. We are doing IVF

with PGD starting in September. We are lucky that we can afford it.

If we couldn't, we would be looking at adoption.

mom to Ashton 2 yrs w/cf http://www.babyfergie.com

> I am interested in hearing stories from couples who chose to have

> another child after they had one with CF. We would love to have

> another, but cannot afford the uncertainties of IVF-PID. We

> struggle with whether or not it would be selfish to bring another

> child with CF into the world. On the other hand, we don't want our

> daughter that has CF to think we didn't have more children because

> of her. Maybe others' stories will help us make our decision.

> Thanks.

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I have to agree with , although this being my third child we had

decided not to have more (had a tubal during c-section delivery)because I have

problems with pregnancy(preeclampsia and gestattional diabetes) that gets a

little more severe with each child. But knowing now I would NOT have another. I

definitely vote for adoption or foster parenting. I was a foster child for

several years and can attest to the fact that a good foster family can be a

blessing.

In the end, it is ONLY a decision that you and your husband can make

and no matter what you decide you have to live with it and be able to handle

more criticism.

Not trying to be negative.

Marie, mom of 3 youngest wcf

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I too had another child after my daughter was born, we did wait almost 3 years

until my son was born. Was I afraid yes, but he is such a joy and now 17 years

later I am glad I had him. Also not all things show up on tests, my daughter

with CF does not have any identifiable genes, so that is out as far as checking

before hand. And I have a grandson that was born perfectly healthy and now at

almost 3 has only matured to a 1 year old. One just never knows how long we

will have our children and if you feel comfortable having another child then

that is your and your husbands choice. No body can live in your shoes and what

is right for one maybe wont work with another. But don't let anyone make you

feel bad for your choices.

judy

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I think you have answered your own question. You would love to have

another child. Do whatever you feel comfortable with to make it

so. If the uncertainties of biological children are too scary, then

you can pursue other options.

I know you wanted to hear from other couples that have chosen to

have more children, but I did want to give my perspective. We have

chosen to have an only child. I am in my mid thirties and my first

pregnancy was very rough with many complications. I do not have

warm fuzzy feelings about being pregnant and cannot imagine having

another child with or without cf. I adore my son and want to do

everything I can to keep him healthy and happy.

Some may think I am being selfish to deny Zach a sibling, but I can

only do what is right for me and our little family seems just right.

Sara - mommy to Zach 17 months wcf

> I am interested in hearing stories from couples who chose to have

> another child after they had one with CF. We would love to have

> another, but cannot afford the uncertainties of IVF-PID.

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That's a desicion that only you and your husband can make.

I personally chose not to have anymore children. Although we were

blessed to have a healthy son first, and then Dallas. I really don't

know how I'd feel if Dallas were my first. We are considering foster

care for the future. I know the guilt would eat me alive if I'd

planned another child and he/she had CF too. I can't say that i

didn't hope for an oops pregnancy though ;)

We are however going in for sterilization in a couple weeks. We took

a long time to consider it and this is where we are now.

Good luck..you'll definatley be doing a lot of soul searching.

Carla

> I am interested in hearing stories from couples who chose to have

> another child after they had one with CF. We would love to have

> another, but cannot afford the uncertainties of IVF-PID. We

> struggle with whether or not it would be selfish to bring another

> child with CF into the world. On the other hand, we don't want our

> daughter that has CF to think we didn't have more children because

> of her. Maybe others' stories will help us make our decision.

> Thanks.

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Hi there:

When we had Ricky, we knew that he would not be an only child. I was

an only child and I always wished for a sibling. In fact I wanted a

huge family, but that was not meant to be (our divorce was final this

past December... If things had gone better we might've had more than

two kids).

Of course we questioned ourselves about this when Ricky was diagnosed

(at about 2 weeks old). As time went on, he seemed fairly healthy

and we started to think about trying again. I got pregnant when

Ricky was just over 1-1/2 years old.

Shortly after his second birthday, but before the results of my amnio

came back, Ricky had his first major CF hospitalization (after he

cultured PA for the first time). This scared me, because he was no

longer " fairly healthy " .

The amnio results showed that the baby did not have CF. We would

have continued the pregnancy no matter what the results, because we

knew that we could deal with another child with CF, but we did the

amnio so we could be prepared to deal with a premature baby or a sick

child if the baby did have CF. In fact, we thought it might have

even been good for Ricky to have a little sibling with CF so he had

that sibling support. I had a friend in the CF community who was

pregnant at the same time as me, and her second child turned out to

also have CF. It's all the luck of the draw.

Some may call us selfish to make the decision to have another child.

I think that we were making a decision to do what was best for our

family.

Ricky also happens to have learning disabilities, developmental

delays, eye problems, ADHD, and bipolar disorder in addition to his

CF. Any of these things (and many other things) can happen with any

other child, just as something other than CF could have been wrong

with Andy. At least with CF we would have somewhat known what to

expect.

I hope this makes sense. I guess in a nutshell I believe that

everyone needs to make the decision that is best for their family.

Becky , single (divorced) mom of Ricky (7) with CF and Andy (5)

no CF

> I am interested in hearing stories from couples who chose to have

> another child after they had one with CF. We would love to have

> another, but cannot afford the uncertainties of IVF-PID. We

> struggle with whether or not it would be selfish to bring another

> child with CF into the world. On the other hand, we don't want our

> daughter that has CF to think we didn't have more children because

> of her. Maybe others' stories will help us make our decision.

> Thanks.

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Well, My feeling is that you have to do what feels right for your family. I

always assumed that I would have a few children, maybe three. Right now we only

have our daughter and we are not trying for another at this time

(although I do get that baby craving now and then) If I were to become pregnant

by accident and I found out that the child had CF, I would not have an abortion

as it doesn't line up with my feelings on when life starts-however I believe

that others have to do what is right for them. We do plan to have another child

at some point, but now we are quite ready. I do not feel that it is cruel or

selfish to bring a life into this world even if it has a 25% chance of having an

illness. the child would have a 75% chance of being ok. Some kids with CF do

have a tough time of it at first (our daughter was a week late and pronounced

healthy at birth) though this is not the case with all kids with CF. I think

that you know in your heart what is right for you and your family. Make you

decision based on your own feelings

Mom of , 4 & 1/2 with CF

Subject: Re: Pregnancy thoughts...

> I am interested in hearing stories from couples who chose to have

> another child after they had one with CF......... Maybe others' stories will

help us make our decision.

> Thanks.

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In a message dated 7/21/2003 4:17:13 PM Central Daylight Time,

blueyejud@... writes:

> I too had another child after my daughter was born, we did wait almost 3

> years until my son was born. Was I afraid yes, but he is such a joy and now

17

> years later I am glad I had him. Also not all things show up on tests, my

> daughter with CF does not have any identifiable genes, so that is out as far

> as checking before hand. And I have a grandson that was born perfectly

> healthy and now at almost 3 has only matured to a 1 year old. One just never

knows

> how long we will have our children and if you feel comfortable having

> another child then that is your and your husbands choice. No body can live in

your

> shoes and what is right for one maybe wont work with another. But don't let

> anyone make you feel bad for your choices.

> judy

>

Judy I agree with you totally!!! Live is not perfect and we can't expect it

to be you just have to take it as it comes!! Deb A

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My son is 3 years old. He was diagnosed at 4 months after getting dehydrated

and electrolytes out of balance. Besides that, he is healthier than most 3 year

olds. He is pancreatic sufficient and so far no lung involvement. He is a

delight and I can't imagine life without him. I realize he is the exception

rather that the rule, and that most with cf are not as healthy, but I would

still have another. We originally intended to have another right away because

of my age, but with the cf diagnosis we weren't sure. Now that we have decided

to go for it, I'm afraid we may have waited too long.

But anyway, my point is, there is a big difference in symptoms from person to

person. One may suffer greatly and another not at all. Just because the child

has the cf genes doesn't necessarily mean doom and gloom. Maybe you should ask

n or Becky, as people with cf, how they feel. I can understand if someone

choses not to get pregnant because of the possibility of cf, but to kill an

unborn child because of it...that I can't agree with.

Angie

Pregnancy thoughts...

I am interested in hearing stories from couples who chose to have

another child after they had one with CF. We would love to have

another, but cannot afford the uncertainties of IVF-PID. We

struggle with whether or not it would be selfish to bring another

child with CF into the world. On the other hand, we don't want our

daughter that has CF to think we didn't have more children because

of her. Maybe others' stories will help us make our decision.

Thanks.

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After our first daughter was diagnosed with CF we started to look into

adoption when we found out that we were expecting Eme. We did not do any

testing prior to her arrival as we felt that we wouldn't make any changes.

When Eme arrived she had a much more difficult start then Morgen and her CF

pictures as different as it is the same. We have decided that in the future

we would adopt, however the risk of adopting a child with health

difficulties is a huge possibility as is the emotional difficulties between

the children regarding their differences i.e. why do you spend more time

with this child, why is that child more healthy. What I can tell you about

our experience having two children with CF is that they have each other to

consult with, gripe to regarding our stance on treatments and comfort one

another. The girls have a greater understanding of what they each go

through and therefore even at a young age they are able to help each other

in ways as parents we are unable. I am thankful that they have each other

to share this with when we are unable to provide the answers as parents. I

guess that my opionion regarding the choice to have another child is that it

is a personal choice you as a couple will have to make, however having

another child with CF can have as many and more positives than just negative

aspects.

Kris In Idaho

Morgen and Eme bwcf

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> If we couldn't, we would be looking at adoption.

>

Adopting does not mean getting a non-CF child. Our son is adopted

and he has CF. It came as quite a surprise as I am quite friendly

with his birthmother and family and they had NO idea they had CF in

the family until my son's genetic test results found 2 mutations.

jan

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My husband and I have made the decision to only have one child for several

reasons: (2) was born 6 weeks early w/ meconium ilius had a colostomy at

12 hrs old and spent the next 2 months at a nicu 130 miles from our home. he has

been doing fairly well since culturing p.a. twice and some liver problems. but

for the most part pretty healthy. we both work full time him nights me days (we

don't see enough of each other to make a baby!) so no day care is needed helps

to keep him healthy. I will be 41 in oct ,hubby 42 so we are'nt spring chickens,

high risk pregnancy with . We both grieve the fact that we wont give

a sibling but it's a choice we feel is right for us for the above

reasons. I will never judge someone else for making a different choice this is

just what is right for our family.

amy, mom to a very precious active 2 year old

Re: Pregnancy thoughts...

That's a desicion that only you and your husband can make.

I personally chose not to have anymore children. Although we were

blessed to have a healthy son first, and then Dallas. I really don't

know how I'd feel if Dallas were my first. We are considering foster

care for the future. I know the guilt would eat me alive if I'd

planned another child and he/she had CF too. I can't say that i

didn't hope for an oops pregnancy though ;)

We are however going in for sterilization in a couple weeks. We took

a long time to consider it and this is where we are now.

Good luck..you'll definatley be doing a lot of soul searching.

Carla

> I am interested in hearing stories from couples who chose to have

> another child after they had one with CF. We would love to have

> another, but cannot afford the uncertainties of IVF-PID. We

> struggle with whether or not it would be selfish to bring another

> child with CF into the world. On the other hand, we don't want our

> daughter that has CF to think we didn't have more children because

> of her. Maybe others' stories will help us make our decision.

> Thanks.

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

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My husband and I discussed birth control, etc.. However with both of my

children I had very difficult pregnancies, for them and me. Pretem labor with

them both, and we found out that Piper was a twin, I lost the other one at 16

weeks, to my surprise when I never had another cycle, I called the doc and they

did a sonogram, and there she was, tiny but perfect (to me), anyway, I didn't

want to risk a third pregnancy and have more complications or another

miscarriage (I've had 2), so we had my tubes tied the day after I had Piper.

Kind of ironic, because 4 months later she was diagnosed with CF, I guess it was

a blessing in disguise. Do I wish I could have more children, ABSOLUTELY!!!

After all I'm only 23, and knowing that I will never have another child

depresses the hell out of me. But as everyone here has already said, ultimately

the choice is up to you, but know this, every child no matter how healthy or how

sick can teach you so much about yourself that you never knew. So in

your heart you know you want another child, do it!!! If they have CF, so what,

it could always be something so much worse.

Katy

Mom to Austin 4 no CF & Piper 1 w/CF

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