Your kids with genetic disease having children

[Barb_]

I was trying to figure out a title that reflected my thoughts. I don't want to debate in the abstract whether or not people with genetic diseases should reproduce. My concern is of a personal nature.

 

I have a grown daughter with somewhat managed bipolar 1. She is seriously involved with a great guy who through a misfortune of genetics suffers from Ehlers Danlos and also narcolepsy. They want to marry and have children. She has expressed some worry that their future could be very complicated. Part of me hopes they don't work out and each finds a healthier partner to inject better DNA into their respective gene pools. The other part of me adores the boyfriend and hopes he remains in the family. How would you advise this child-woman if she were yours?

 

I really want to say, "Don't have children," or "Wait for a decade or so," but she is determined to be a mom right after college graduation. She is the only one of my kids so far who wants children more than anything else. Any advice or things to think about when we talk about this again?

 

I'm not really looking to solve this, because it isn't my problem to solve. Mainly I want to have some suggestions ready from people who have been there. I did suggest that they not move away from family right at first. They may need the support only family can provide, especially at first. What else?

[Lang Syne Boardie]

Our kids with physical issues have said they intend to wait awhile, and to limit family size to two children. Sadly, I'm sure we've given them the impression that our greatest difficulty has been multiple issues across four children...there was so way to make that look any easier, I guess.

 

My son is engaged to a wonderful girl who does also come with her own set of genetic quirks. They intend to live in our city, between the sets of parents, for support. Which is wise because both sets of parents are the type who will offer free childcare but who won't be able to afford a plane ticket!

[Ottakee]

This is a tough one.

 

My 2 girls have an Inherited genetic disorder. Out of the 7 bio siblings we have located 6 have various degrees of it but all of them are significantly impacted by it.

 

One DD wants to get married and have children. Right now that is very risky for her and a future child medically. There is a chance of a cure on the horizon in 5-10 years which could change the outlook completely.

 

For now though she is on a 3 year birth control implant.

[Barb_]

This is a tough one.

 

My 2 girls have an Inherited genetic disorder. Out of the 7 bio siblings we have located 6 have various degrees of it but all of them are significantly impacted by it.

 

One DD wants to get married and have children. Right now that is very risky for her and a future child medically. There is a chance of a cure on the horizon in 5-10 years which could change the outlook completely.

 

For now though she is on a 3 year birth control implant.

Same here. No accidents, so there is that. It has to be a conscious decision.

[maize]

Unless they know that they will be passing on a negative dominant trait or that they both carry a particular recessive trait I am not sure how much sense it makes to try to predict genetic outcomes.

 

A couple of examples: neither my MIL nor FIL were aware of either physical or mental health problems lurking in their genes, but they produced two children with hearing and vision impairment and multiple children who as adults have had serious mental health struggles. On the flip side, both kids with vision/hearing trouble have gone on to produce multiple children with zero signs of the same problems.

 

Where mental health is concerned, the genetic factors are complex and not well understood. There is certainly some increased risk of children developing mental health problems if a parent has them, but there is also a decent chance of perfectly healthy offspring. We're learning more about causes and effective management strategies all the time, I have hope that even if my own kids don't have the best genetic background their chances of living a stable and productive life are better than any generation in the past.

[Janeway]

I have given this a lot of thought, but in the end.....here is what I have concluded....

 

It appears it is likely that a particular relative (great grandparent) had mental illness that led to him being hostile and cruel. No sign of that level of cruelty with his kids. But then of his kids kids, one of them seemed a little detached, with no sign of family history on the other side. And two of his kids kids kids (of the ten I know) the hostile mean angry hostility started to show, one of whom has family history on the other side. And then of the kids kids kids kids (as in, the original grandparent's great great grandchildren) there is at least one with the high level of hostile and attacking behaviors with no other known family history.

 

I did a lot of research and it seems as if it is not as simple as two recessive genes coming together to make bipolar. I do not know the genetics of the other issue you are speaking of, so I can only speak of bipolar. My cousin with bipolar has two wonderful and amazing parents that I spent a lot of time with growing up. His mom was a stay at home mom who was very involved and his dad had a very active and successful career. Both parents of his dad were also amazing. But his dad's dad's dad (great grandpa I am referencing) is the one who was horribly violent. Now, another cousin, one who was great and wonderful, no mental health at all, her daughter has turned out much like the great grandpa. OK...so..it takes multiple genes to trigger bipolar. I have done tons and tons of research due to the ASD and the genetics of that. And even Hitler thought if he kept less than perfect people from procreating, he would have a super race. It did not work. Even amongst the babies of his super race procreators, there was still a same number of problems seen in the off spring as there were in the general population. The end conclusion is, there is a high chance all the kids will be just fine. And there is just as much chance that any of your healthy children will end up having a child with bipolar or any other genetic condition seen elsewhere in the family. 

 

I hope this helps! I would have liked to have explained better, but it is so hard to do via a post. I just have years and years of research on this issue. And some of my cousins, and a few aunts and uncles and now my grandma have been doing the genetic testing and comparing. Heck, if I went back to grad school, I would like to study genetics. I just feel I am too old for that.

[Guest]

I have a dc who shares my genetic issue. He was not easy to parent when he refused to go with the doctor's advice. It wasn't until after college that he started to understand what gene expression means, what his supplements do for him, and how to work with his doctor so he doesn't go down my trail. Reading stories such as those by Kevin Strauss (Scientific American, Dec 2015 among others) who works to solve genetic diseases in an Amish community was eye opening to him. I wouldnt advise no dc, but go with eyes open and good preparation. So,.genetic counseling, understanding of bio, understanding of food choice effects, personal finance education, shadowing with a family who has dc with similar medical needs,.and also investigate what's new in treatment options since they were children.

Edited September 23, 2017 by Heigh Ho

[nixpix5]

It sounds like she has a guy who is great and she loves him so super blessing there :)

 

I would probably lovingly encourage them to sit down with a genetic counselor during pre baby prep and talk. Genetic counselors are wonderful. They can provide them with all of the necessary information and potential risk they will be facing but also how to plan if they are set on biological children. They can also discuss other options.

 

This is a touchy subject and I don't want to inject debate about these things but there are other possible interventions:

-donor eggs and or sperm

-adopted embryo

-adoption

-embryo selection to test for and deselect disorders.

 

It is good just for two people to be well informed and then really assess what they are and are not ok with ethically/spiritually/etc.

 

It sounds like she has a heart for motherhood and what a wonderful thing that is! :)

Edited September 23, 2017 by nixpix5

[StephanieZ]

I'd encourage them to consult a genetic counselor. I'd push pretty hard to encourage them to get as much data as possible on the odds of their children inheriting a serious ailment. I'd support considering sperm and/or egg donation if needed (and I'd probably help pay for it if it were very expensive and thus an inhibition to considering it). I'd also encourage consideration of adoption.

 

If they chose to reproduce, knowing the risks, I'd hope for the best and support their family however I could. 

[TravelingChris]

Pretty much everybody has some family tendencies. Going into it with wide eyes open is all I can suggest.

[regentrude]

I would encourage them to get genetic counseling with a professional to discuss these issues so they can get information on the risks of passing on their respective traits. It's complicated, since some traits need to come from both parents, and some are recessive. It is best to have this conversation with a person who has expertise in this field.

Edited September 23, 2017 by regentrude

[kroe1]

It would be a non-issue to me as I would just be the potential grandmother. It would be none of my business. Had I been the one with a severe genetic disease, by my own definition, I would have probably wanted only to adopt even though there still is a genetic unknown in all of us.

[solascriptura]

Try to encourage her to seek a genetics counselor. It’s one thing to think, “we may have some difficulties†and knowing for sure that your unborn children will have a 50 percent chance of a specific genetic disorder. Also, discuss with her the need for excellent medical insurance. It’s one thing to be perfectly healthy and have mediocre insurance and another thing to be sick and have bad insurance.

[zimom]

Recent genetic testing has confirmed that our family carries a genetic issue I would rather not pass down.  My adult son has a 50% chance of having the gene.  Fortunately more of my kids are adopted then not so all of the kids are very open to the idea of adoption.   He and I have already had some discussion regarding him having the testing in the near future and if positive he and his long term girlfriend will need to sit down and hopefully make the decision before the decision is made for them. 

[regentrude]

Also, discuss with her the need for excellent medical insurance. It’s one thing to be perfectly healthy and have mediocre insurance and another thing to be sick and have bad insurance.

 

This.

Sadly, in this country, this poses restrictions on the parents life choices they would not face in many other places. It means that at least one of the parents needs to choose a career path that makes it likely for them to find a job with employer offered healthcare. It also means that they will be less flexible in their choice of place to live, because they will have to have a job that offers insurance.

These are good things to be aware off well before trying to conceive.

Edited September 23, 2017 by regentrude

[Barb_]

Unless they know that they will be passing on a negative dominant trait or that they both carry a particular recessive trait I am not sure how much sense it makes to try to predict genetic outcomes.

 

A couple of examples: neither my MIL nor FIL were aware of either physical or mental health problems lurking in their genes, but they produced two children with hearing and vision impairment and multiple children who as adults have had serious mental health struggles. On the flip side, both kids with vision/hearing trouble have gone on to produce multiple children with zero signs of the same problems.

 

Where mental health is concerned, the genetic factors are complex and not well understood. There is certainly some increased risk of children developing mental health problems if a parent has them, but there is also a decent chance of perfectly healthy offspring. We're learning more about causes and effective management strategies all the time, I have hope that even if my own kids don't have the best genetic background their chances of living a stable and productive life are better than any generation in the past.

That's true, and isn't something I was considering. Thanks for the encouraging words :)

 

I also worry about my dd's mental health struggles and her need for the right balance of meds coupled with my future son-in-law's health struggles. I wish they'd wait until they were a little older--late 20s. Gain a little maturity, you know?

 

But yes, you're right. There is no guarantee what any roll of the dice will come up with

[Barb_]

It sounds like she has a guy who is great and she loves him so super blessing there :)

 

I would probably lovingly encourage them to sit down with a genetic counselor during pre baby prep and talk. Genetic counselors are wonderful. They can provide them with all of the necessary information and potential risk they will be facing but also how to plan if they are set on biological children. They can also discuss other options.

 

This is a touchy subject and I don't want to inject debate about these things but there are other possible interventions:

-donor eggs and or sperm

-adopted embryo

-adoption

-embryo selection to test for and deselect disorders.

 

It is good just for two people to be well informed and then really assess what they are and are not ok with ethically/spiritually/etc.

 

It sounds like she has a heart for motherhood and what a wonderful thing that is! :)

Thanks to you and all the subsequent posters who suggested genetic counseling. This is a practical suggestion I hadn't thought of.

[Barb_]

Try to encourage her to seek a genetics counselor. It’s one thing to think, “we may have some difficulties†and knowing for sure that your unborn children will have a 50 percent chance of a specific genetic disorder. Also, discuss with her the need for excellent medical insurance. It’s one thing to be perfectly healthy and have mediocre insurance and another thing to be sick and have bad insurance.

That's a good point. She has a tuition scholarship, but has almost dropped out of college more than once because she just isn't academically motivated. I know that seems counterintuitive, but I think she was hoping to find her niche once she got to school. She mostly just wants to have kids and homeschool. I've encouraged her to go ahead and finish a degree in something, anything, in case her SO is ever incapacitated and can't work. With a degree she will be more likely to find full time work with family health benefits if she ever really needs it.

Edited September 23, 2017 by Barb_

[Lang Syne Boardie]

This.

Sadly, in this country, this poses restrictions on the parents life choices they would not face in many other places. It means that at least one of the parents needs to choose a career path that makes it likely for them to find a job with employer offered healthcare. It also means that they will be less flexible in their choice of place to live, because they will have to have a job that offers insurance.

These are good things to be aware off well before trying to conceive.

This topic scares the snot out of me. My ds and his fiancée will be two highly educated, responsible and employed persons...with serious and expensive preexisting conditions. Even though I'll be thrilled about any future grandchildren and help all I can, in the back of my mind I'm always hoping and praying that we will solve our healthcare crisis to save these two, in the first place...

[Barb_]

This topic scares the snot out of me. My ds and his fiancée will be two highly educated, responsible and employed persons...with serious and expensive preexisting conditions. Even though I'll be thrilled about any future grandchildren and help all I can, in the back of my mind I'm always hoping and praying that we will solve our healthcare crisis to save these two, in the first place...

:grouphug: :grouphug:

[Barb_]

Thank you for the practical suggestions, everyone. That's exactly what I was hoping for. She usually brings it up when she's home for any extended period, so I know it worries her too. I'd like to have some ideas percolating for the next time she mentions it.

[Rachel]

I struggle with this and the infant screenings they now perform at birth. We learned my daughter is a carrier for a serious disease. While she does not have it, she will have to consider whether or not to risk passing it on to her children someday and I hate that for her. She doesn't even know she's a carrier yet. Treatment has improved dramatically for the disease and will likely continue to improve over the next decade or so before she is old enough to have children, but it doesn't guarantee an easy life. If her future husband is not also carrier, that will make the decision much easier as it decreases the risk of passing on the genes.

 

We will likely encourage her to speak with a genetic counselor when she is older so that she can have a better idea of what to expect. She's only 7 now, so we have a few years.

 

(Now going back to read the previous responses)

[Butter]

I think the most important thing is for them to just know what they are up against.  What their chances of passing things on are, etc.  The thing is, genetics are weird and a bit unpredictable.

 

But then, people reproduce all the time not knowing there is a genetic soup thing going on.  Our family has a lot of issues.  My dad, my daughter, my youngest son, and I all have Celiac.  But we didn't know that was the problem until my daughter was diagnosed in 2014.  All the testing I went through in my teens revealed nothing (because Celiac wasn't on people's radar back then).  My husband is mildly allergic to wheat, too.  We had all our kids before we knew about the Celiac.  My daughter has EDS and POTS and it was only when she was being tested for stuff earlier this year that we found out that my cousin also has EDS and POTS and we can pinpoint many people on my dad's side who likely had EDS.  So, again, kids were born before we had a clue there were genetic issues.

 

My daughter has been sickly her whole life and she has all these problems and she has concluded, on her own, that she probably shouldn't have kids herself.  Partly because it would be very difficult on her body and partly because she could pass on all this stuff.  I could never have told her this.  She really had to conclude it all on her own.  She is all for adoption (though, even then, you could end up with a kid with genetic issues, just different ones).

[Dmmetler]

I'm going to also encourage genetic counseling. DH and I both had family histories that made us reluctant to consider having children. Genetic counseling pretty much showed that there was no greater risk for those specific situations than for any random couple (although DH was recommended to start getting mammograms because his family history of breast cancer is strong enough that even as a male extra screening is recommended).

 

It didn't keep us from having other complications, but it allayed a lot of fears.

[Barb_]

I'm secretly praying ds never has kids. There, I said it. I don't want my grandkids to deal with a mental health crisis or T1D, and I don't want my son to deal with it as a parent. It's heartbreaking and it's taking over our lives right now. It's very nearly unbearable.

I'm sorry. We had that sort of year last year but things are getting better. I hope for you there is a light in the tunnel

[Melissa in Australia]

Hugs

[TeenagerMom]

My son has a seriously complicated medical history with possibly inheritable genetic disease(s), yes multiple unfortunately.  His is what the Geneticist suspects is a dominant gene mutation.   They said we could come back when he was a teenager to do a more in-depth analysis on his possibilities of offspring inheriting his disorders.

 

He has just already made the decision that he will not have biological children to eliminate the risk from the get-go. One of his conditions can cause sub-par fertility so there is a good chance he wouldn't be able to anyway.  He would just rather adopt if he ever marries and his partner wants kids, since he is pretty apathetic towards the subject anyway.  He knows what a challenge his childhood has been with his issues and the impact that it has had on our family and would rather just avoid all that if possible. 

 

 

[SparklyUnicorn]

Well, one plus is if they end up with a child with the condition(s) they will understand how to cope.  That's not nothing.  They may have difficulties, but they are here and living their lives.

 

I think since there are still so many unknowns with being with that person or being with someone else...or waiting or not waiting...I wouldn't think too hard about that detail.  For example, what about the unknown genetic conditions a potential mate might have?  What is more important is if they are right for each other (in other areas).

 

 

[Pen]

foster parenting, adoption ....  possibly of older children in need, not infants.  

 

I think this might work out better for the parents and their needs as well as be potentially really wonderful for the children who would get their love.  I think infants and toddlers (even if they themselves had no issues) could put a huge burden on top of bipolar / and eds / narcolepsy situation.  I think older children, even if they had some problems themselves, might be more manageable.  

[kiwik]

My son has a seriously complicated medical history with possibly inheritable genetic disease(s), yes multiple unfortunately. His is what the Geneticist suspects is a dominant gene mutation. They said we could come back when he was a teenager to do a more in-depth analysis on his possibilities of offspring inheriting his disorders.

 

He has just already made the decision that he will not have biological children to eliminate the risk from the get-go. One of his conditions can cause sub-par fertility so there is a good chance he wouldn't be able to anyway. He would just rather adopt if he ever marries and his partner wants kids, since he is pretty apathetic towards the subject anyway. He knows what a challenge his childhood has been with his issues and the impact that it has had on our family and would rather just avoid all that if possible.

Maybe he could marry someone who already has kids. I didn't find out I had the BRACA mutation until after kids. I have boys but they may have to consider it when older. I did know about the asthma and depression. We are clear on the first so far and i am working with ds8 who is like me. In fact we have just started homeschooling which i hope will break the cycle a bit.

[rebbyribs]

I would look into whether the way her Bipolar is managed is considered safe during pregnancy and ask about trying out other methods ahead of a potential pregnancy if that would be necessary during pregnancy.

[Rachel]

I'm secretly praying ds never has kids. There, I said it. I don't want my grandkids to deal with a mental health crisis or T1D, and I don't want my son to deal with it as a parent. It's heartbreaking and it's taking over our lives right now. It's very nearly unbearable.

I'm sorry! That's got to be tough.

[Barb_]

I would look into whether the way her Bipolar is managed is considered safe during pregnancy and ask about trying out other methods ahead of a potential pregnancy if that would be necessary during pregnancy.

Yeah, this is something else we've talked about. She isn't safe without meds, but there are probably some that are worse than others. If she is going to be playing around with her meds she should ideally do it beforehand. And hopefully she would be living near family to help keep an eye on her.

[HS Mom in NC]

I think you should do what you would do with any adult (who isn't your kid) in that situation.  You know, something like, "That sounds like a lot to carefully weigh.  You should talk to your medical specialists and geneticists about those issues."

And no, I would not automatically suggest fostadoption and adoption for people with bipolar and other serious issues.  If bipolar is an issue in your life, having older or special needs kids isn't going to be easier. Adoptive parenting is much harder than biological parenting and parenting foster kids has its own constellation of challenging issues-particularly as they age.  Please consult with other adoptive parents, medical staff who treat adoptees, teacher who teach adoptees, and the like before deciding to adopt or suggesting it to someone. 

[Barb_]

I feel similarly about adoption. It does come with its own set of stressors. I feel comfortable making practical suggestions, things to think about--but bringing up adoption feels to me like crossing a boundary. I don't know why it feels different, but it does. I know Pen and others were well-intentioned though.

[Pen]

I feel similarly about adoption. It does come with its own set of stressors. I feel comfortable making practical suggestions, things to think about--but bringing up adoption feels to me like crossing a boundary. I don't know why it feels different, but it does. I know Pen and others were well-intentioned though.

 

 

Then don't bring up adoption. I'm sorry I mentioned it.  Possibly that would not be possible for your dd and her potential dh anyway.

 

To think about:

 

I saw some children going into the foster system because a parent with bipolar could not cope with the baby--not that the love was not there, but the situation was not workable.  And sadly could end up as neglect or abuse just due to the emotional issues of the parent.   A tiny baby is extremely vulnerable when a parent is having problems.  And love alone is not always enough to make up for some problems.

 

I also knew one parent with some similar emotional issues to lose parental rights to a child who had some sort of fragility syndrome ( I think not EDS, but similar sort of things happening), where it was thought that the parent had been physically abusing the child even though she probably was not. (I mean, I do not know for sure, but believe the mother that the child was having joint dislocations and such b/c of his medical situation, and would have even if his mother had been the most stable person in the world.) But it turned out very traumatic for everyone involved as I guess the mother was charged with criminal abuse.  I don't know the ultimate resolutions.

 

I know several grandparents raising their grandkids because their children were not capable of doing so, in somewhat similar circumstances to what you've described. 

 

You probably have as good as or probably far better idea from day in and day out observation than her doctors do how well your dd will be able to cope with raising a baby. Or several.

 

And if she is likely to have trouble or periods of trouble, you probably know as well or better than anyone else, what back up your dd will have from you and the rest of her family, the prospective dh, and/or inlaws.

 

I often agree with Homeschool Mom in AZ, and I think we are both adoptive parents of special needs kids, but I disagree with the idea that you would say the same thing to your dd as to any adult in that situation -- because you know far more about her capabilities than about those of most adults,  and also about your own availability if she cannot do the parenting.

[maize]

Well, one plus is if they end up with a child with the condition(s) they will understand how to cope.  That's not nothing.  They may have difficulties, but they are here and living their lives.

 

This is true! Sometimes familiar challenges are easier to work with than total unknowns.

[Terabith]

That's true, and isn't something I was considering. Thanks for the encouraging words :)

 

I also worry about my dd's mental health struggles and her need for the right balance of meds coupled with my future son-in-law's health struggles. I wish they'd wait until they were a little older--late 20s. Gain a little maturity, you know?

 

But yes, you're right. There is no guarantee what any roll of the dice will come up with

 

I understand what you're saying, and that's a good argument.  But, on the other hand, the odds of genetic disorders go up with both maternal and paternal age.  So, I can see a good argument for having children as early as financially prudent. 

 

I'm bipolar.  My husband has an anxiety disorder, although it wasn't diagnosed until after we had kids.  We have two kids, currently aged 12 and 13, and one of them has mental health issues, although more severe anxiety.  Neither currently have a bipolar diagnosis. 

 

It's definitely something to consider, but on the other hand, they don't have the same genetic issues.  Not sure about your son in law's issues genetically, but the genetic bipolar relationship is strong but still only a 10-25% chance of developing it, and it is pretty darn treatable. 

 

[nixpix5]

My brother is currently a single dad to his 10 year old daughter. Her mother was a sweetheart with manageable bipolar prior to the pregnancy. Something about pregnancy changed her hormones and over all brain composition in such a way as to make her bipolar much worse. Her highs and lows came on more frequently and with much more intensity. She loved her daughter desperately but even with treatment she just couldn't parent her. She ended up moving across the country and has only had phone contact with my niece for the past 7 years. She has sense had another child and that dad skipped out so she is parenting him but protective services has been involved twice already and he is 4 yo.

 

While bipolar doesn't get officially diagnosed until teen years, my niece is already showing some emerging signs. My brother is nervous and trying to get a plan in place if that were to end up being the case.

 

I say this because bipolar can come in many flavors and can change as someone ages. It is definitely something worth considering for someone going into parenthood. As others have said though, there are no guarantees with any parenting situation. We get who we are meant to parent and we make the best of it and love them with every fiber of our beings :)

[HS Mom in NC]

Telling your adult children what they should do about future parenting isn't a great idea whether they're unstable or not.  Yes, as a parent you do know more about your own child than other adults, but that's irrelevant. We all know more about our kids than their peers, but that doesn't mean we should go telling them what to do about future family planning.  Medical professionals will be better heard than parents by young adults.  There's no emotional dynamic there.  Anything a parent says can be met with, "What do you know?  You're not a medical professional."  So tell the young adult to consult the medical professional who knows far more than the parent about the exact medical issues involved. 

And being unstable makes people bad candidates for parenting. No one should walk into adoption saying well, I know I'm not so stable but mom and dad will intervene when my known problem comes up, so they're my back up plan.  Grandparents are back up plans for those unforseen, unavoidable problems that come along in stable people's lives. 

My niece, with a history of mental health issues had a baby 2 years ago when she was 19. She lived with her father, (my oldest step-brother) her grandparents, and her sister who is a year younger.  They thought she was doing fine and just spent a lot of time online like her peers.  It turns out she had decided she didn't want to be a mom anymore and made arrangements with strangers she met on the internet to give them her toddler.  No first hand knowledge of them.  No agency who does background checks.  She texted my daughter about it and my daughter was absolutely frantic and called me to intervene.  3 hours later my niece agreed to let the toddler come home with me while medical professionals and adoption placement professionals got involved.  My youngest brother and his wife are adopting the toddler who has been living with them since about 10 days after I got her next month.

You cannot screw around with giving children to mentally unstable people.   It turns out my mentally unstable niece's mother wasn't just a pain in butt, she was mentally unstable to.  The damage it did to my nieces is deep and disturbing. My other niece is now pregnant, married and showing signs of being unstable.  My oldest brother, who was married to the pain in the butt has his own issues with his mentally unstable mother which made him unable to see just how disturbed his wife was. On and on it goes. And no, you won't always be able to see what's going on in someone else's home, often until it's really bad.  So, no.  Please do not suggest placing foster children with someone who has a history of being unstable.  Just don't.

[AngieW in Texas]

This is an issue here.

 

My oldest does not intent to have children, which is good, because she really has never shown any tendency to do well with children. With the issues that she has, I doubt that she will ever work full-time anywhere (although that would be fantastic). She hasn't had an in-person friend since she was 15yo and even when she did have friends, nobody ever stuck with her for more than one year because of her issues. She just isn't good at being a friend. And despite social skills classes and lots of therapy, she just won't be good at being a friend. She had one part-time retail job for a full year, but had to leave because she developed an allergy to the chemicals that are put on new clothing. She has been at her new job for five months and likes it, but it is another part-time job. The biggest concern for me is when she decides that she doesn't need one of her medications anymore or when we have to stop one of them because of side effects (one of them started causing seizures).

 

My middle is the only one who would really do well with having children, but she would prefer to adopt if possible. 

 

My youngest has Ehlers Danlos and does not intend to have children. I don't think that would be very safe physically. Ribs dislocate just from breathing. I can't imagine the pain that would happen with pregnancy and childbirth, especially since pain medications don't work very well. My youngest has declared since about 10yo to not want to ever have children, so even though EDS has pretty much taken away the choice, at least it was something that wasn't a goal.

[Crimson Wife]

I am hoping that CRISPR will allow my child with 2 pathogenic genetic mutations to become a mom if she is high-functioning enough as an adult to have a stable marriage and finances.

 

The mutation causing her hearing loss is fortunately recessive and rare enough that it is unlikely her future husband would carry it as well. However, the ASXL3 mutation causing her developmental and learning disabilities is dominant. So any bio children of hers would have a 50/50 chance of carrying it as well. CRISPR offers the possibility of targeted gene editing to fix the mutation and allow her to have healthy children. Scientists are still working on perfecting the technique but in 15-20 years it may be commercially available.

[Terabith]

Interestingly, I was worried about becoming less stable while pregnant/ postpartum, but honestly, I have whatever the opposite of postpartum depression is.  I have never in my life been as rock solid stable as I was when I was pregnant and nursing.  It was really phenomenal for me, stability wise.

[Pen]

Telling your adult children what they should do about future parenting isn't a great idea whether they're unstable or not.  Yes, as a parent you do know more about your own child than other adults, but that's irrelevant. We all know more about our kids than their peers, but that doesn't mean we should go telling them what to do about future family planning.  Medical professionals will be better heard than parents by young adults.  There's no emotional dynamic there.  Anything a parent says can be met with, "What do you know?  You're not a medical professional."  So tell the young adult to consult the medical professional who knows far more than the parent about the exact medical issues involved. 

 

And being unstable makes people bad candidates for parenting. No one should walk into adoption saying well, I know I'm not so stable but mom and dad will intervene when my known problem comes up, so they're my back up plan.  Grandparents are back up plans for those unforseen, unavoidable problems that come along in stable people's lives. 

 

 

 

 

 

The OP's dd and potential SIL are unstable and bad parenting candidates?  I was not making that assumption.

 

I think that both people with bi-polar and with EDS can make good parents. It depends.  Putting them both together could make things harder, but the dd may never meet a nicer man, so it does not make sense to me to look for someone with different genetics.  If he is a great guy, as Barb wrote, that is hugely important!

 

 

 

 

Barb has already expressed that in their family, if the potential couple is going to have children, they could stay near family for back up help.

 

This means that their family does not live by the rule you have for grandparents.

 

I totally agree that whether the young couple were to have biological children, or any children, that staying near family would likely make a huge difference, and definitely think that would be something to bring up with the dd in future conversations on the subject.

Edited September 25, 2017 by Pen

[rose]

In terms of Ehlers Danlos in particular, I don't know if you realize this but it can range from very mild to quite serious. My mother and brother both have it. My mother is quite mild and my brother's is moderate. My parents had six children and only one of them has issues. Just because it's in the genes doesn't mean that you're even somewhat likely to have a child with a bad problem. I'm glad that my parents had me. ;)

[Barb_]

Interestingly, I was worried about becoming less stable while pregnant/ postpartum, but honestly, I have whatever the opposite of postpartum depression is. I have never in my life been as rock solid stable as I was when I was pregnant and nursing. It was really phenomenal for me, stability wise.

That's really interesting. Do you have a bipolar type or would you rather not say?

[Barb_]

In terms of Ehlers Danlos in particular, I don't know if you realize this but it can range from very mild to quite serious. My mother and brother both have it. My mother is quite mild and my brother's is moderate. My parents had six children and only one of them has issues. Just because it's in the genes doesn't mean that you're even somewhat likely to have a child with a bad problem. I'm glad that my parents had me. ;)

Yes as far as I know he is the only one who shows signs of it and he has 4 siblings. His dad has narcolepsy, so that's where he got that and honestly the narcolepsy is more difficult for him to deal with on a day to day basis, especially at this point in his early 20s. His sleep is awful, he is rarely 100% rested, and when he's stressed he can just drop off mid-sentence. Once he slumped down while walking across a parking lot. It stinks, poor guy.

[Terabith]

That's really interesting. Do you have a bipolar type or would you rather not say?

 

They've gone back and forth on whether I'm type 1 or 2.  I definitely have more depressive episodes than manic episodes, although as I age, there's a theory that the mania presents as anxiety.  But I have had pretty clear cut manic and mixed episodes, so probably type 1, although I'm currently doing well not on any classic mood stabilizers. 

 

I may not be typical, however, because Neurontin was pretty much a miracle drug for me when the dosage got high enough.  And probably not placebo since I went through a whole host of other drugs with no relief before we tried that one.  Studies show that it doesn't work in bipolar, but there's really no doubt that it absolutely did for me.  My psychiatrist says that he's had a few other patients for whom it has worked well, that the studies are probably right and that on average, it doesn't, but that there may be individuals who respond well to it.  It's just that they are so few it's not going to show up on studies. 

 

But nothing worked as well as pregnancy and lactation.   I did stay on my meds, but it's the only time I've had rock solid control.  I'm a good mother to tweens, but I was a GREAT mother to babies and toddlers. 

[HS Mom in NC]

The OP's dd and potential SIL are unstable and bad parenting candidates?  I was not making that assumption.

 

I think that both people with bi-polar and with EDS can make good parents. It depends.  Putting them both together could make things harder, but the dd may never meet a nicer man, so it does not make sense to me to look for someone with different genetics.  If he is a great guy, as Barb wrote, that is hugely important!

 

 

 

 

Barb has already expressed that in their family, if the potential couple is going to have children, they could stay near family for back up help.

 

This means that their family does not live by the rule you have for grandparents.

 

I totally agree that whether the young couple were to have biological children, or any children, that staying near family would likely make a huge difference, and definitely think that would be something to bring up with the dd in future conversations on the subject.

 

I've seen first hand what hoping a stable spouse will do for the unstable spouse several times.  It was tragic.  I have seen first hand that an unstable parent living in a house with stable people wasn't the fail safe people wished for.

 

 

[desertstrawberry5]

D and I have similar conditions. We debated whether or not to pass on our genes. Years ago, when less was known.

 

We decided that our lives, while not perfect, were worth living. We did not think our parents should have chosen not to have us, based on our health.

 

We have done a better job parenting our children with needs than our parents did, because knowledge is better now, help is available, and we understand.

 

Of our five, two have our problems ( one each) and two have something unrelated we could not have predicted. Their needs have been handled infinitely better than ours.

 

We did feel a bit like we were rolling the dice. But I am glad we have the children we do. They are healthy and have a positive outlook.