Another baby??

[anonymous]

How many of you have had a baby with CF and then opted for another baby??? I would like to think that my baby would have a little brother or sister one day.....We always wanted more children and i feel cheated by this....I cant cope with another baby with CF but who knows maybe in 5 yrs when my little girl is doing well i will think again. I would consider IVF????

Paula

 

[anonymous]

Paula,

I do not have children, but I am a 44 pwcf. I can only give you my family history. I am the 11 of 11 children and the only one with cf.

 

[rose4cale]

Paula, my husband and I are in the same position. Our 5 yr old does not have CF and our 2 yr old does. We also think about having another, but I don't think I am mentally ready for the possibility of having another with CF. If it were to happen of course I would deal and love that child just as much. But the things that are weighing on our minds are the cost of the disease, possibility that the next child may have it more severe and the fact that CF is not easy for the person living with it. We are completely optimistic that the quality of life is improving for CF patients, but it is a gamble we're not ready to take.

We are also interested in IVF and adoption. We haven't looked into the insurance coverage on IVF, but you'd think they would rather pay for the $10,000 process over a life of medical bills, IMO! I know that is not how they always think though.

 

[julie]

Cale's mom,

Once you look into your ins. IVF options, I recommend you write them a letter about the longterm costs of CF (break it down dummy proof) vice the one time cost of IVF. I have heard of (dont' know anyone personally though) people getting their Ins. to cover it after a few letters like that.

Just some ideas

 

[rose4cale]

Julie, that is GREAT to know. It's the same idea of ins. co. not wanting to cover the cost of birth control pills. To me, pills seem cheaper than birth! We are certainly tossing the idea around, so we will look into it first. Thanks!

 

[julie]

No problem. I know it worked for some people, but it didn't take just one appeal, we are talking like three or four over a year... but in the end ins. paid for it. It's worth a shot, I was going to try to do soemthing like that to try and get our ins. to cover it. But since mark is the one with CF and we don't have a child with CF..... were out of luck on that one.

 

[anonymous]

I actually looked into the PGD Procedure. That is IVF with Genetic Testing. Most insurance companies do not cover the IVF but will cover the genetic testing portion of it. Most IVF cycles cost well over $10,000.00. There is a good center in NJ called the Cooper Center for Invtro that does PGD - they have a website. There is also Crozer Hospital in Chester, PA (crozer.org). They have had 2 successful births with PGD.

My husband and I would love to have another child but to spend that much money for something that might not even work is tough to take. I would rather just adopt but my husband says we should just be happy with the 2 boys we have.

Good luck!

 

[ReneeP]

Hi Paula,

I have 2 daughters with CF (also 3 sons without)... I should explain further though, my first child was a boy, no CF...my second child was a girl with CF (though we didn't know it till she was 2 1/2). To say I "opted" for another child would be inaccurate as I never intended to have anymore, but there was a birth control pill screw-up (entirely my fault) and it happened. I found out during the pregnancy that she also had CF and did opt to continue the pregnancy and have her. So, in that sense I opted to have another child. My other two sons are mine by marriage. My husband and I have sole custody of them, but I did not give birth to them.

As far as having another child after knowing the risk, it's a very personal choice and one people have strong feelings about. For me, it's a decision I do not regret. Of course my daughters are basically very healthy now. My oldest had lots of problems until she was 3 but has been fine since and is now 10. My younger daughter has never had a lung infection (though she has some sinus problems and just had surgery yesterday). As far as CF goes, it is an inconvenience for them for sure as they have to take time out of their day to do treatments, take enzymes, etc, but it doesn't rule their lives. Now that's not to say my feelings won't change later if they get sick. I can only speak from the position I am in at present. I can't imagine one of my girls without the other. They support each other and they don't feel alone. Now please don't take that to mean I would recommend having a second CF child just so the first one isn't alone, I'm just saying that is one of the positives I can make out of the situation I am in.

I wish you the best in whatever you decide for your future. There are definate benefits to having only one child (or so I am told, lol)... I sometimes feel guilty that I can't spend more time with each child cuz there are just so darn many of them... so if it turns out that way for you, it's not necessarily bad thing. I believe we should make the decisions we feel are right and try to see the positives that come from those decisions. We can always find negatives, but those do us no good.

 

[anonymous]

When my husband and I discussed the possibility of having another child we not only thought about having another child with CF. We also thought what if the baby did not have CF it would not be fair to that baby because of all the time that is involved with taking care of our child with CF. We have definitely seen the effects of this on our older child that does not have CF. All the years when he was tossed around to different family members because our CFer was in the hospital. Our oldest child has never said anything, but, it has to be really rough on the non CFer when you think about it.

 

[anonymous]

I am the third of four children in my family and I am the only one with cf. My parents knew I had cf before they had my younger sister, and when she was born she tested negative for it.

Shamrock, x

 

[anonymous]

so anonymous, I am confused...did you WISH CF on your unborn child?

 

[julie]

I seriously don't think that's what they mean, and we shouldn't turn this topic into a fight.... I think what they meant is that they are considering the feelings of EVERYONE involved, and this would include the children without CF as well. Maybe it's not this way in all families but, most of the time the CFer gets a lot more attention (not necessairly the kind of attention anyone wants, but hey, it's still attention) than any of the other children. I think it is only fair and logical to consider any children you already have (not thatyou can do anything about it, but do you best to pay attention to them as well ) as well as if you already have one with CF, what will you do if the next baby has CF, and what will you do if they don't have CF... do you have enough time, patience, family support (and so on) to care for 2 CFers, or to care for 1 CFer and a brand new baby??? I think it is a really logical way of thinking.

I don't think they wish CF on any of their children, what is wrong with you?

 

[anonymous]

Nothing is wrong with me! I have one child with CF and my second child does not have CF and I spend the same amount of time with each of them! It really isn't that hard.....and I work too! I understand that it may seem that the CF child gets more attention because of all the treatments, but it itsn't hard to get the time in with the non cfer as well. There are many who will have a child no matter what and I applaud them...it takes a lot to care for one CF child, let alone 2, but for someone to make a comment as the poster (I was refering to) did, I HAVE to question it.

Sorry if you don't agree but I am NOT trying to start a fight...I just disagree with how the poster stated the topic!

K

 

[JazzysMom]

Although the two children get equal amounts of time.....is it equal in quality or quantity. As we all know a CFer does get a lot more time just in the routine of treatments, meds etc. Now how about trying to spend time with that CFer that doesnt include this & doesnt include things that is homework, cleaning their room etc like you have with any child. Balancing quality time with children is hard even when there are no special needs so to do it with a special needs child is even more challenging!

 

[ReneeP]

This is an interesting topic and one I suspect we'll always have our differences on. It's a highly emotional issue. I'm the "self-declared" queen of special need children so I can speak from lots of experience here. Obviously both my daughters have CF. Also, my two sons have major communication and learning disabilities. We have been through speech therapy, neuro-psychological evauls, neuorology evauls, evauls done at the schools, etc and still don't have an answer as to what is actually wrong. They get special education at school. They have actually required more special attention in most ways than the girls do. They can't do homework alone, you have to be extra careful taking them anywhere because they will just wonder off so easily. They need extra help in everything. My girls are extremely intelligent. They are both well above grade level in school. Yet they require much care physically. All that leaves my 12 year old son (he'll be 13 in 3 weeks...a teenager, ouch). Anyway, he's just your average American boy, no problems to mention. He's the only child out of our 5 who is not considered special needs. He's never been in any real trouble, doesn't really like chores or homework, but still does them... may not get straight A's but can usually pull off a couple of them with a few B's and an occasional C. Plays football and loves PlayStation games. He's studying up on PG 13 movies right now and trying to figure out which ones he wants to see since he's about to turn 13...lol... He's a great kid all the way around. Has he suffered from lack of attention? Who knows... but if he has, he doesn't show it. Could he have received more attention had I not had all these other children who needed so much care? Sure. But maybe he would have been spoiled more and wouldn't be such a good, responsible, well-balanced kid too. I can't second guess what I've done now as it's too late. Kyle knows that his brothers and sisters need more attention and he understands that. He understood that from a very early age. All children are different and need different levels of care. We make the best with what we're given and that's all we can do. You can take all the precautions you want (IVF, etc) and avoid CF but you can't guarantee that your child is going to have no problems or going to require special care. We just never know.

 

[buggygurl321]

I can only give you my best wishes and family history: I am the oldest of three kids and the only one with cf.

 

[anonymous]

I was the anonymous poster that mentioned considering the feelings of all the children, even those that did not have CF. I have no idea where you came to the conclusion that I would "wish" CF on an unborn child. I am glad that your Cf child does not take time or attention away from your child that does not have CF. In my case we are not so lucky because my daughter is classified as a "severe" CFer. She is in the hospital basically every 2-3 months for 2-4 weeks at a time. Things did not start out this way she just started going down hill when she turned 7 (now 12). Our son (16) without CF definitely does not get enough of our time or attention and spends alot of time with family members when his sister is in the hospital. He is a wonderful child and never complains about the attention his sister gets, but we can't honestly say that he has not been affected in some way. I'm sorry but it is not justified in our eyes to see our 16 year old go into his sister's room in the middle of the night, kneel down by her side and cry and pray to God not to take his sister. This we could not see placing on another child. I understand if some of you do not understand what I am talking about. Fortunately your CF children must be doing fairly well.

 

[anonymous]

Sorry, this is off the baby topic, but I was struck by the last poster's story-it sounds familiar . I have an eight yr old son who has had a very difficult year and a half, with the every 2-3 month hospitalizations and the Drs just can't seem to explain why he keeps going right back down hill after each round of ABs. We have tried evrything we and they can think of and are about 2 weeks post the latest round of meds and keeping our fingers crossed hard-he is coughing again but not too bad yet. Having this go on indefinitely with the inevitable decline, well, you can imagine my fear. His quality of life obviously suffers as well. I rarely read on these boards about others in this boat- there seem to be lots of parents of little ones and lots of teens doing pretty well, or the flip side, folks who have been transplanted pretty young. Is that where we are headed?
Like the last poster too, my son has a sibling who is four years older. He too is pretty mellow about the amount of time the little one gets, but sometimes definitely feels he gets the short end of the stick.

 

[anonymous]

To the last poster, I know how frustrating & hopeless this may seem at times. I assume they are doing sputum cultures and using the meds that the sputem culture shows that he is sensitive to to treat any infections/bacteria?
I have had periods of months at a time where I catch every cold, can't seem to shake an infection even after IV's and wonder if this is the beginning of the end but I usually pull through and regain some lost ground. One such time, I had MRSA show up on a sputum culture for the first time and after I treated that, I started to feel better & gained some ground back.
Keep us posted on how he does.
God Bless

 

[anonymous]

This is my personal belief!!! I am not trying to pass judgement on anyone else!!!

To me, fertilizing eggs( more than one) and then testing to see which ones have CF and which ones don't and then discarding the ones that do is Abortion.

IVF is not an option for me, I will not have anymore children.