Classic: This is so sad (TW: child loss/illness)

mrsconn23

I have two young sons, both with a rare genetic disorder which means they will not survive beyond their 20s. My husband and I want to try for a third child—this time with genetic counseling—as the idea of being bereft of children in our 40s is far too devastating for us. But we wonder at the ethical implication of having a child who will lose both her siblings while in her teens, as well as growing up with parents who will be focused on caring for two highly dependent, special needs children. Is what we’re contemplating totally selfish? I am torn and in need of an objective, third-person perspective.

STARMOON44

It seems to me that you need to seek out specialty counseling on this. A good fertility clinic should either have a psychologist on staff or be able to refer to one with expertise in complicated reproductive choices. 

banana468

Seek a quality genetic counselor.

Not the parents but I watched BIL and SIL go through this.  And we attended two funerals two years in a row for our saints in heaven due to genetic issues.    LW in addition to seeking the counselor also needs to talk to a regular counselor because if she and her spouse are going to see a third child born with a genetic disorder how is that something that they both want to handle for their grief along with the understanding of their kids who will also need some serious therapy of their own. 

After seeing this but not as the parent if I was asked for my opinion I would be really emphatic that I did not think a planned 3rd pregnancy was a good idea whatsoever. 

short+sassy

I'll be the harsh one and say, "Yes, at least from the info in the letter, it sounds selfish to have a third child."  Even assuming they could be assured their third child would not have this genetic disorder, they seem to be saying their third child would be somewhat neglected because of the extensive needs their sons have. 

Do they even want a third child for that child's sake?  It doesn't sound like it.  They are hoping to have a still living child, once they are older.  I can't imagine how heart breaking it is, to know you are going to outlive your children by decades.  But having another child just to possibly fill that void isn't fair to anybody.

charlotte989875

There are other ways to have a child than to have a biological child. 

But not just from the perspective of watching their siblings die, but will you have the time and capacity to parent all of your children- not just when you’re “bereft of children in your 40s” but from now until that point. That’s 15-20ish years. 

banana468

short+sassy said:

I'll be the harsh one and say, "Yes, at least from the info in the letter, it sounds selfish to have a third child."  Even assuming they could be assured their third child would not have this genetic disorder, they seem to be saying their third child would be somewhat neglected because of the extensive needs their sons have. 

Do they even want a third child for that child's sake?  It doesn't sound like it.  They are hoping to have a still living child, once they are older.  I can't imagine how heart breaking it is, to know you are going to outlive your children by decades.  But having another child just to possibly fill that void isn't fair to anybody.

And that's a 3rd child who will grow up knowing that they won't live much longer than their adolescence.  That is a HUGE issue for someone to grasp. 

When I brought up the issues of BIL and SIL with my own OBGYN he mentioned that some genetic testing is so sensitive you just don't do it on teens because it's ethically bad to give teens information that they cannot process.  How awful is it to have that information from birth! 

I have really really mixed feelings on this and there are times that I have inner arguments about them. 

mrsconn23

banana468 said:

short+sassy said:

I'll be the harsh one and say, "Yes, at least from the info in the letter, it sounds selfish to have a third child."  Even assuming they could be assured their third child would not have this genetic disorder, they seem to be saying their third child would be somewhat neglected because of the extensive needs their sons have. 

Do they even want a third child for that child's sake?  It doesn't sound like it.  They are hoping to have a still living child, once they are older.  I can't imagine how heart breaking it is, to know you are going to outlive your children by decades.  But having another child just to possibly fill that void isn't fair to anybody.

And that's a 3rd child who will grow up knowing that they won't live much longer than their adolescence.  That is a HUGE issue for someone to grasp. 

When I brought up the issues of BIL and SIL with my own OBGYN he mentioned that some genetic testing is so sensitive you just don't do it on teens because it's ethically bad to give teens information that they cannot process.  How awful is it to have that information from birth! 

I have really really mixed feelings on this and there are times that I have inner arguments about them. 

It sounds like LW wants to be sex-selective with the third kid because this is a disorder that only affects males or is less likely in females.  So I'm not sure they're trying to have another kid that may die from the disease.  But that's a HUGE emotional burden to put on kids.  It's akin to the parents that have a kid to save another kid (because they do genetic testing and whatnot and then harvest the kid's bone marrow or worse, organs, to save their sibling). 

And I can see your self arguments about BIL/SIL.  That's just a very hard situation and I'm sure there's a lot of avenues you can go down in regard to that. 

STARMOON44

mrsconn23 said:

banana468 said:

short+sassy said:

I'll be the harsh one and say, "Yes, at least from the info in the letter, it sounds selfish to have a third child."  Even assuming they could be assured their third child would not have this genetic disorder, they seem to be saying their third child would be somewhat neglected because of the extensive needs their sons have. 

Do they even want a third child for that child's sake?  It doesn't sound like it.  They are hoping to have a still living child, once they are older.  I can't imagine how heart breaking it is, to know you are going to outlive your children by decades.  But having another child just to possibly fill that void isn't fair to anybody.

And that's a 3rd child who will grow up knowing that they won't live much longer than their adolescence.  That is a HUGE issue for someone to grasp. 

When I brought up the issues of BIL and SIL with my own OBGYN he mentioned that some genetic testing is so sensitive you just don't do it on teens because it's ethically bad to give teens information that they cannot process.  How awful is it to have that information from birth! 

I have really really mixed feelings on this and there are times that I have inner arguments about them. 

It sounds like LW wants to be sex-selective with the third kid because this is a disorder that only affects males or is less likely in females.  So I'm not sure they're trying to have another kid that may die from the disease.  But that's a HUGE emotional burden to put on kids.  It's akin to the parents that have a kid to save another kid (because they do genetic testing and whatnot and then harvest the kid's bone marrow or worse, organs, to save their sibling). 

And I can see your self arguments about BIL/SIL.  That's just a very hard situation and I'm sure there's a lot of avenues you can go down in regard to that. 

Yeah or just screen embryos for the issue which can be done effectively for some conditions. I read it as making sure a third child wouldn’t have this condition. 

banana468

Also in addition to this LW should consider the chances that if a child is born without the disorder will that child still be a carrier? 

DH himself hasn't gone through genetic testing but we're considering telling our kids to consider it once they are adults.     

Casadena

STARMOON44 said:

mrsconn23 said:

banana468 said:

short+sassy said:

I'll be the harsh one and say, "Yes, at least from the info in the letter, it sounds selfish to have a third child."  Even assuming they could be assured their third child would not have this genetic disorder, they seem to be saying their third child would be somewhat neglected because of the extensive needs their sons have. 

Do they even want a third child for that child's sake?  It doesn't sound like it.  They are hoping to have a still living child, once they are older.  I can't imagine how heart breaking it is, to know you are going to outlive your children by decades.  But having another child just to possibly fill that void isn't fair to anybody.

And that's a 3rd child who will grow up knowing that they won't live much longer than their adolescence.  That is a HUGE issue for someone to grasp. 

When I brought up the issues of BIL and SIL with my own OBGYN he mentioned that some genetic testing is so sensitive you just don't do it on teens because it's ethically bad to give teens information that they cannot process.  How awful is it to have that information from birth! 

I have really really mixed feelings on this and there are times that I have inner arguments about them. 

It sounds like LW wants to be sex-selective with the third kid because this is a disorder that only affects males or is less likely in females.  So I'm not sure they're trying to have another kid that may die from the disease.  But that's a HUGE emotional burden to put on kids.  It's akin to the parents that have a kid to save another kid (because they do genetic testing and whatnot and then harvest the kid's bone marrow or worse, organs, to save their sibling). 

And I can see your self arguments about BIL/SIL.  That's just a very hard situation and I'm sure there's a lot of avenues you can go down in regard to that. 

Yeah or just screen embryos for the issue which can be done effectively for some conditions. I read it as making sure a third child wouldn’t have this condition. 

that's how I read it too. 

I dont' really love the idea of them having more kids, mostly because it seems like LW and spouse want to essentially have a backup kid because sadly their current 2 children likely won't be around when they're older.  That's horribly sad, but I just feel like their motivations aren't in the right place?  

But i'm also not them and this is such a hard place to be that i'm not really sure there's totally a right or wrong answer. 

banana468

And these sons will know eventually that their younger sibling was conceived so she didn't have the same fate.  That's a lot to put on your dying kids' plates. 

VarunaTT

I do think it's selfish and I sympathize with them.  I've also had friend's that had one special needs child and then had a second child.  I've spoken to a few one of them about their thoughts and feelings and this is one of those things that I think everyone has to just decide for themselves.  There's not going to be a good answer, it's just one of those questions that morally isn't easy, and I don't think anyone can have an objective opinion.

short+sassy

VarunaTT said:

I do think it's selfish and I sympathize with them.  I've also had friend's that had one special needs child and then had a second child.  I've spoken to a few one of them about their thoughts and feelings and this is one of those things that I think everyone has to just decide for themselves.  There's not going to be a good answer, it's just one of those questions that morally isn't easy, and I don't think anyone can have an objective opinion.

I wanted to add also that I don't necessarily assume because parents have a special needs child(ren), that this means they will neglect their healthier child(ren).

But, in their case, that was pretty much what the LW said.  Just used softer words then "neglect".  That was what jumped out at me the most.

mrsconn23

short+sassy said:

VarunaTT said:

I do think it's selfish and I sympathize with them.  I've also had friend's that had one special needs child and then had a second child.  I've spoken to a few one of them about their thoughts and feelings and this is one of those things that I think everyone has to just decide for themselves.  There's not going to be a good answer, it's just one of those questions that morally isn't easy, and I don't think anyone can have an objective opinion.

I wanted to add also that I don't necessarily assume because parents have a special needs child(ren), that this means they will neglect their healthier child(ren).

But, in their case, that was pretty much what the LW said.  Just used softer words then "neglect".  That was what jumped out at me the most.

Well and also, LW will either be exhausted trying to give time to the healthy child amidst taking care of two kids that will need far more from them or healthy child will be told 'suck it up buttercup' in some form until her brother's eventual deaths and then have to deal with grieving parents and who knows what that will look like. (Yes. holy run on sentence)

I just really think a shit ton of counseling is needed with this decision-making and an honest look at how life will really be with 2 dying kids and one healthy one.  

banana468

There are some comparisons here that I'm getting with the other letter of the "Little Orphan Annie" here.  So much of this just makes me feel....squirmy.  

And I also don't know what it's like to bury a child.  I get that.   But of all the ways that the LW is attempting this it makes me feel weird and even more sad for these boys. 

mrsconn23

banana468 said:

There are some comparisons here that I'm getting with the other letter of the "Little Orphan Annie" here.  So much of this just makes me feel....squirmy.  

And I also don't know what it's like to bury a child.  I get that.   But of all the ways that the LW is attempting this it makes me feel weird and even more sad for these boys. 

Yes.  These are lives we're talking about, not...things.  However, grief and this kind of pain makes people desperate.  There's so many opportunities for bad, untended consequences. Ones this entire board couldn't even come up with even if we all listed something different.  

LW has to have some acceptance that while none of this is fair and they will never know 'why' this happened to them, emotionally, since the science is clear, that this is the hand they've been dealt with their first two kids.  They know the risks of having another kid and are trying to mitigate that, but they have to understand the cost to all the kids if these two are sick and future kids are not.