Having another baby- how was your journey?

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Helenlight

New member
So I'm interested to know what people's experiences are with deciding to have more children after you've had one diagnosed with CF. I always thought we'd try naturally knowing that there was a possibility of having another with CF, but I've recently changed my mind to thinking IVF with PGD is probably the more sensible option. Our daughter (DDF508) is 3.5 now, and though I wouldn't change her or our journey so far, I think having any more children with CF would stretch us too far and impact what we are capable of giving to our children, to each other, and to our lives in general. Another option that my SO has put on the table is adoption, but I'm not sure how I feel about that yet. I think in all honesty I'd like to try for one more of our own, and then maybe consider adoption after that. I can't see us having more than 3 total, but I don't pretend to know what the future holds...

So what was your decision-making process? And if you did go for IVF/PGD, what was it like?
 
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Helenlight

New member
Thanks Autumn, looks like not too many people have shared their experiences yet (even on the other threads), so it will be interesting to see if anyone else comes out of the woodwork! :)
 
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triples15

Super Moderator
Helenlight said:
Thanks Autumn, looks like not too many people have shared their experiences yet (even on the other threads), so it will be interesting to see if anyone else comes out of the woodwork! :)
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Yep, you're right, not a lot of info floating around on here. Megan (mneville) is the main person that comes to mind who has shared specifically about IVF/PGD. I know you're looking for several other viewpoints, but in regards to questions you have about the actual IVF/PGD process maybe you could PM her? Like I said in the linked thread, she always seem willing to share about it.

The other thing I wanted to add, is that although our situation was different in the fact that I have CF, we also had to talk about the types of decisions you're facing. Because we knew there was a risk our child could have CF, we knew that we would not pursue having a biological child until we had my husband carrier tested. If he was a carrier, we did not plan on trying "the old fashioned" way, because it was something we *personally* weren't willing to risk. Fortunately, he was not a carrier, and after many years of trying we were blessed with a daughter. In our years of trying, we discussed IVF as well as adoption, and these decisions don't come easily. With IVF we had concerns about multiples, in the fact that we didn't feel multiples would be ideal for my health, and yet we also didn't feel like "reduction" was a choice we could make in the event I became pregnant multiples. We had concerns with the expense of both IVF and adoption.

There are just so many factors in a decision such as this. I do hope you get some more replies!

Autumn 34 w/cf
 
A

Aboveallislove

Super Moderator
Hey Helen,

In trying to find an old post I had wrote re our thought process (which I couldn't), I found this thread: http://forum.cysticfibrosis.com/thr...d-child-What-did-you-do/page8?highlight=child

I'll just add my thoughts since you asked: We too struggled with whether to try to have a second child with the possibility of CF. We eventually decided to try but were not able to conceive again. It was a tough decision and I think there is no right or wrong, but it is every couple deciding together and also with a big fear of "could we handle this if the child had cf." While the idea of PGD is tempting, understanding the science of it, we never considered it because we couldn't fathom destroying our "imperfect" offspring, especially when we looked at our "perfect" son who genetically was similarly imperfect at that stage.

I'd just end with a story: A dear friend shared a story of a mutual acquaintance who had 6 boys and was overjoyed to be pregnant with a little girl...until she found out the little girl had Down's. As we were speaking of how sad, a wise man said "that little girl will make those boys better men than they could ever have been without her." We often see the pain and loss, but there is always a good with the "imperfect" amongst us. And she is a perfect little girl and her brothers will be much better for her.
Hugs and prayers,
Love
 
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ethan508

New member
I am my parent's 5th child. CF was not my particularly on parent's radar until my failure to thrive as an infant (my mom has a cousin with CF). Once I was diagnosed, all my siblings were implicated and needed testing. I can't imagine the anxiety in getting all 5 of your kids tested for such a disease (life expectancy was just 19 at the time). As a parent I have a bit of insight that this was a huge trial for my parents, but they handled it so amazingly well when I was a kid that I really didn’t know it was a trial. Plus I was so young that by the time I became more aware, they had grown in their ability to handle the ups and downs of the disease.

After a while (and much prayer and pondering) my parents decided that there was another kid they were meant to have. So they had my little brother (I was 5 when he was born). And unfortunately he has CF. This has been a trial, and there are some trials yet to face, but my parents would never trade him (or any of us) for the world. I have an awesome little brother. We were thick as thieves growing up and I’m grateful I have him. I don’t want to speak for my brother, but I’m pretty sure he’s glad he exists and from my point of view, he has a very nice life full of love, and challenges, and set-backs, and triumph.

This is a very sensitive subject with a lot of emotion. It is tough to put into words all the thoughts a person might have concerning such a thing. Only you and your husband and God will be able to decide together what the best path is for your family. One of the greatest joys we have in life is the love we have for our family. With any great love, we risk the great sorrow that comes as that person faces illness, challenges, or death. Is that depth of love worth the risk? I know my answer, what is yours?
 
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ethan508

New member
All that ^ being said, I think adoption, and modern reproductive technologies are awesome and great paths to go down to build a family if that is the direction you decided is best for your family.
 
F

fuel1316

New member
Helenlight said:
Thanks Autumn, looks like not too many people have shared their experiences yet (even on the other threads), so it will be interesting to see if anyone else comes out of the woodwork! :)
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hi!

we have 2 with CF. we had our first with CF (MI at birth and nicu for a month- lots of ups and downs) but like you we wavered between ivf and natural. we decided to let what happen happens with our second. she came natural after a year and she too has CF. she is a lot healthier and really only needs some enzymes but the rest is well for her.

we said if we ever had a 3rd we would for sure do ivf.

well as i type this we are 7 weeks pregnant. it was not exactly intended but here we are :) hoping the 3rd is without cf but we will love them no matter

i dont really have a lot of advice on choosing to or not. i guess it comes down to if you want to pay out $20K and know for sure they wont have CF (but really could have any other issue pop up anyways) or take the 25% chance they have cf. even if you did ivf you could end up with twins and thats stretching you guys thin as well.
 
R

Ratatosk

Administrator
Staff member
We waited until we were in our late-30s before having children. Had always intended to have two, but ds was born with MI, 6 weeks in the NICU and the first two years were a bit stressful with 3-4 treatments a day, bowel issues... We thought about PGD or adoption, but decided to focus on ds and his needs instead. Had we been younger when he was born, might have reconsidered, but I was pushing 40 by that time.

I have a few friends who opted to just take the chance and see what happens. They all have more than one child wcf. One of my friends opted to adopt. This is a tough decision. We thought long an hard about it, as did everyone else. You have to do what is right for you and your family, what you're comfortable with....
 
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Helenlight

New member
Thank you for all your stories. I know deeply that this can be an emotional subject. In regards to people who have got a diagnosis while pregnant- if that happened to us I could never terminate, I just wouldn't be capable of it. I see PGD as different to that. I have also heard a story (on one of the other threads) where none of the viable embryos had 2 CF genes anyway- so I guess that makes for an easy decision... The other thing is- IVF with PGD is free for couples like us (who carry serious genetic conditions) in New Zealand- two rounds funded by the govt I believe.
I think the person who changed my mind to PGD was a good friend who had 2 grown up boys with CF, one of them passed away recently at 31. When she and her husband first had their children PGD was not available. So now they are facing the fact that at some point in the future they will have lost both of their children. I cannot imagine the unbearable pain. Maybe I'm saying too much, and I'm sorry- but these are the things we have to work through. We do not carry 'mild' mutations and we have to acknowledge everything that means. It's the hardest decision I've ever had to make.
We don't have family in the city we live in, and we are not wealthy enough to have a nanny, so the vast lion's share of care falls on me, and it's really hard. On the other hand, I don't know what it is like having a teen or adult with CF- perhaps it gets easier.

As you can see, I'm right in the middle of the decision-making process... I think I'm partly sharing for other people too, because I know there are others going through this, but are afraid of the judgements of others, regardless of which way they go.
 
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fuel1316

New member
Helenlight said:
Thank you for all your stories. I know deeply that this can be an emotional subject. In regards to people who have got a diagnosis while pregnant- if that happened to us I could never terminate, I just wouldn't be capable of it. I see PGD as different to that. I have also heard a story (on one of the other threads) where none of the viable embryos had 2 CF genes anyway- so I guess that makes for an easy decision... The other thing is- IVF with PGD is free for couples like us (who carry serious genetic conditions) in New Zealand- two rounds funded by the govt I believe.
I think the person who changed my mind to PGD was a good friend who had 2 grown up boys with CF, one of them passed away recently at 31. When she and her husband first had their children PGD was not available. So now they are facing the fact that at some point in the future they will have lost both of their children. I cannot imagine the unbearable pain. Maybe I'm saying too much, and I'm sorry- but these are the things we have to work through. We do not carry 'mild' mutations and we have to acknowledge everything that means. It's the hardest decision I've ever had to make.
We don't have family in the city we live in, and we are not wealthy enough to have a nanny, so the vast lion's share of care falls on me, and it's really hard. On the other hand, I don't know what it is like having a teen or adult with CF- perhaps it gets easier.

As you can see, I'm right in the middle of the decision-making process... I think I'm partly sharing for other people too, because I know there are others going through this, but are afraid of the judgements of others, regardless of which way they go.
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you have to do what is right for the family. i know its already a lot and you feel like you cant imagine dedicating more time to another possibly sick child and i felt the same way but its just like having a first sick child. you do what you have to and you make it work. you find the way to do it.

in fact (and its not like i would have wanted this but now that we have it) having 2 girls with CF it gives them something that they can share. they both do their treatments and take pills and go see the same doctor.. i dont have CF so i can never know what they go through or feel like inside but they have each other to share that with.

they are still pretty young so its not as profound but i think when they are older they will have that extra layer of bond- knowing there is some one that feels like they feel on good days and bad.

the CF thing is just like dealing with typical healthy kids when you add 1 more. you just do everything twice but since youre already doing it for the first adding in the second doesnt really take a lot more energy- know what i mean?
 
H

Helenlight

New member
By the way, thank you Aboveallislove for the link, there were quite a few responses there. I definitely sense a pattern emerging with the different approaches to the subject :)
 
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imported_Momto2

New member
Helenlight, adoption is a wonderful way to build a family, we were blessed enough to experience it twice. Our children ARE our own.
If you have the ability to screen for CF, I would personally do so. I would have difficulty telling any child I could have prevented their suffering.
Having two with CF greatly increased cross-infection. You would be putting your existing child at greater risk.
 
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