moral question: would you have more kids?

[dzorn]

Why do you assume that your first DD will want to or be able to "handle" your second DD at all?

Well I guess because we love our siblings around here. Including my sister who is also developmentally disabled. If she is not able to handle it emotionally (doubtful) then I have many relatives that would take over. Her special needs trust should take care of the financial responsibility.

Denise in MI

 

[SandrA9810]

My line of thinking is, if I can afford PGD then I can afford to have a child. Yes I know it's extremely expensive and generally not covered by insurance, plus the cost of invitro. There is the other option of amniotic fluid test which is done around 12-15 weeks pregnancy. An abortion usually isn't done after 8-10 weeks unless medically necessary. I don't think I could ever make that kind of decision that far along.

I feel sorry for the oldest. I love him so much and I believe he tries so hard to be a good big brother. But that's just too much for an 11yr old to handle with the mind of a 4-5yr old. He could use so much more time from her at home, one on one, but all her time gets spent on the "baby". All the kids are soo close in age after the second one that there's never been a time without a "baby" in the house. And the fourth one, the one normal girl so far. She knows she's smarter than the rest, and she rules that roost. When she wants to be in charge.... she's in charge. I feel bad too because she's going to have to face these challenges later on.

I wish I could say that I think there's hope for them to be able to some day be self sufficient, but she's not putting in the effort for it. And who knows what's going to happen as they get older.

And I'm not trying to say a mentally handicap person is mental, just that it's in the mind rather than a physical limitation.

 

[NotUrsula]

My line of thinking is, if I can afford PGD then I can afford to have a child. Yes I know it's extremely expensive and generally not covered by insurance, plus the cost of invitro. There is the other option of amniotic fluid test which is done around 12-15 weeks pregnancy. An abortion usually isn't done after 8-10 weeks unless medically necessary. I don't think I could ever make that kind of decision that far along.

But you wouldn't have to. You've overlooked CVS (chorionic villus sampling). It is done at 10-11 weeks, and the culture normally takes an additional 10 days or so. Also, you're misinformed about the timing of terminations; it is normal for terminations to be done up until 18 weeks, and even to 24 weeks in some states, though the preference is generally prior to 16 weeks. (At 8-10 weeks quite a few patients are still unaware that they are pregnant.)

Because of my own medical history I know quite a few women who have had to make choices of this nature. It is hell on earth having to make that decision, but I don't know a single woman who has an older child and who has been faced with this who feels that the choice that she ended up making was the incorrect one.

 

[Rupert B Puppenstein]

If I knew in advance - no I would not have any biological children. It isn't that I couldn't take care of them, but the issue would be after I was gone. Of course if it just happens than you do deal with it. My view is that there are plenty of children out there that need homes that could join my family if the genetic risks were too high for having biological children. It is a very personal decision but I would rather know beforehand than be faced with a difficult decision while pregnant.

 

[DawnCt1]

Thank you. I am sure that there are some freaky attention junkies who get satisfaction from having a kid with a disability or illness, but most of us are just raising our kids, doing what we need to do, and hoping for some emotional support along the way. I do have to say, though, that while I would never have wished autism on my daughter, I am not willing to go to scary places to "cure" her. She receives lots of conventional therapies and social skills training but she will never be put in a hyperbaric chamber, have chelation drugs injected, take dangerous hormones, be put on extreme diets and vitamin regimens, go without life saving vaccines, or otherwise be put at risk in search of a "cure". I suppose some may see the fact that I am not willing to try EVERYTHING as complacency.

God bless you and your DD. Parents love their children and are saddened when their children have an extra burden in life. Some times that burden makes them stronger. Sometimes it wears everyone down. DS#4 was born with a cleft palate. We were blessed. It is and was "fixable". Not every child is so lucky.

 

[C.Ann]

I'm just wondering if it's really that strange for me to want to take precautions like PGD or just avoid having a child at all. My family doesn't seem to get it.

And i'm not talking about ridding the world of disabled people. It can happen in many many ways, and even taking precautions isn't a 100% safe guard. I love my brother, he's got syndrome G (and it's been reported that fragile X is connected to it, and passed along in other members).

My sister's oldest son has fragile X, diagnosed sometime around 2-3. And she was tested as well and knows she's a carrier. I don't need to be test to know I'm a carrier.

Anycase, I just got the news she's pregnant again, and planned, with child number 7. DS11, DD8, and DS6 have fragile X, DD5 is normal, DD3 is showing signs but not diagnosed yet (very little speech), DD2 is too young to tell. With the girls, even if they show the genes, it's hard to tell if it will dominate the father's good gene like it did in us.

She's already living paycheck to paycheck, off SSI for the 3 oldest, child support from the first kid (she refuses to have her hubby take parental guardianship because she'll loose the checks, even though the kid only knows him as his father), and food stamps. Everytime I talk to her, it's "ohh i have to wait till this check comes to go do this". Makes me sick. And my aunt wonder's why I got mad when I heard the news...

I was going to answer the original question - until I reached the part that I have bolded above.. Now I'm not so sure what the original intent of your thread was, so I think I'll pass..

However, I wish your family well - all of them..

 

[Lisa loves Pooh]

I have no idea at all what I would decide. We had predetermined the family size we have...but babies were spaced apart and we had he next child when we were ready. I'm not sure why we waited the 3 years we did for our new baby...but I had my hands full shuttling my son to speech therapy and my attention was diverted to that. And long term, his issue is not all that serious.

If I had a higher needs child, it is more likely that future children would have been on hold until we were comfortable meeting the needs of that child. It would be about what we could manage on our plate and not necessarily a concern for a repeat.


I have a friend who had a baby with downs syndrome as her first baby. She was in her 20s and low risk. The age difference between him and his sister is about 5 or 6 years and she heavily weighed her risks of going for a second. His sister is perfectly normal both physically and cognitively. Her son is mainstreamed and has done Well.

 

[chicagodisneyfan]

Nah, I would not have a child with severe defects - like Trisomy 18.
Mild issues would not be a problem.

In the event I discoved too late or after birth that my child had a significant issue - minimal brain activity, require significant surgeries but never be better, etc I would have a DNR and put in place a plan for palliative care.

My husband and I could not force our child to live a minimal quality of life that we ourselves would not live (we have advanced directives, no machines, etc).

 

[DawnCt1]

Just to elaborate a bit on DS#4's birth. When he was born he was having trouble breathing and had to go to NICU. When I finally saw him in NICU, he was crying. The entire roof of his mouth was missing. We were given an "organ recital" about everything that could go wrong and be wrong from the pediatrician that was filling in for our regular pediatrician. I was sad, crying, worried, depressed. Then my 'best friend' came to visit me in the hospital. She said, "Its a shame that they couldn't diagnose this before birth so you could have done something about it". She meant it exactly as she said it. Believe me, she isn't that "deep". That said, it was EXACTLY what I needed to hear. I asked her if she really thought that I would kill my baby because he "has a hole in his mouth". I was able to focus right then and there on how fixable it was. I was able to mobilize, get him exactly what he needed, not matter who I had to go to "war" with to get it. Of course there were surgeries, and speech, and multiple visits with the craniofacial team, etc, but he and we got through it very successfully. Would I wish it on him or any child? No. Would I have interrupted his life to avoid it? NEVER.

 

[SandrA9810]

I still don't want to have to make a decision after getting pregnant, you know?? I already know my risks are high. Like I said before, it can be present in a girl, but not have any effects of it. What if I got pg with a girl that just became a carrier?? Then I have to live with the fact that she'd wind up going through the same thing as me.

I just can't fathom why my sister would do this?? BTW, she's enthralled with the Duggars. Which to each their own. But at least the Duggars have all functioning kids that help each other out. I think she's asking too much of her older children who need just as much time and attention as the younger ones. There's just not enough of her to go around. Plus she leaves it up to schools and therapy people to do all the work for her.

 

[SandrA9810]

I don't know how else to put it. I'm angry, angry at her, and angry at my family for accepting it. I understand we can't control our genetics, things happen. But if you know, if you're prepared for it... why would you want to do that?? Why would you want to bring another child into this world to have these problems.

 

[Judy from Boise]

My DD was diagnosed at 2 with speech, developmental, and social delays(she was later at age 7 tested and diagnosed with high functioning autism) when at age 2.5 her pediatrician said to me "I reccomend genetic testing prior to your next pregnancy" that was all I needed to hear. I could never put my desire for a child ahead of any quality of life issues for the new child, or ahead of the very real needs of my current one.
Being able to devote our emotional and financial resources to our DD has made all the difference. In fact she is headed off to a college this week that is a complete financial stretch....but so perfect for her.
It was the exact right decision for us to not have another child.

 

[PatsGirl]

The short answer is no. But...I was considered advanced maternal age (or something like that) and it is routine to have an amnio to check for Down Syndome. I refused. I was already pregnant and at that point would not have turned back regardless. If I knew before getting pregnant that I had a significant chance of a child with severe disabilities I would not have a child. But, again....I would adopt and can say that I would adopt a child disabled to a degree that I would feel comfortable in my ability to raise well and take care of their needs, whatever they might be.

 

[JulielovesDisney]

Like others have said on here, if I knew I have a genetic disorder that would cause my child to have a bad quality of life, I would not have children.

I would not want to risk my child going through excessive testing/treatments/surgeries/etc. that would reduce the quality of his or her life. I would be ecstatic to adopt a baby, and I would be able to love him or her as much as I would my own child.

Also, for selfish reasons, I don't think I would be able to go through the pain and heartache of losing a child as well, if that was the outcome of a genetic disorder.

 

[kellyg403]

OP, I have a friend who is in a 'similar' situation. Except that it deals with her female children. There is no one in her generation or the generation before that have any type of disability. She has three children, 2 girls and 1 boy. Her sister had 2 sons early in life and in their teens married a man and they had 3 more boys. The last was born with fragile X. He was not diagnosed until 2.5 but there were obvious issues. To make a long story short they DID NOT KNOW that they were carriers for the Fragile X. She now faces getting her dd's tested since I am under the understanding females are the ones who carry the gene and males are the ones who can have the Fragile X. My bff is long past childbearing years and at least once a month she feels so guilty that she possibly passed this on to her dd's. But she did not know. She worries about their futures, their children etc.

Would she have changed anything? No. But, at least she feels she would have been able to possibly be more prepared for the future. Her oldest dd, 18 and a new graduate as already said she will only adopt. The youngest dd is 9 and has no idea that she is a carrier.

This is such a tough situation to be in. My friend is one of 8 siblings, 4 girls and 4 boys, all of them fine. In this generation there are about 19 children born from these 8...and only one is diagnosed with Fragile X. So, its really a hard call. I don't know if I would, knowing I was a carrier, have children but would rather adopt, then again, they did NOT know, and with one exception all are fine.

Kelly

 

[BEloveDisney]

Nah, I would not have a child with severe defects - like Trisomy 18.
Mild issues would not be a problem.

In the event I discoved too late or after birth that my child had a significant issue - minimal brain activity, require significant surgeries but never be better, etc I would have a DNR and put in place a plan for palliative care.

My husband and I could not force our child to live a minimal quality of life that we ourselves would not live (we have advanced directives, no machines, etc).

It sounds easy to make a decision like this now. The hardest thing I ever did was take my baby off life support. If I knew how his life would end, I would have done things differently I think...However, given the information that I had, we made the best decisions we could both to continue the pregnancy when we found out and then to take him off the ventilator.

I just hope people are taking this kind of decision seriously and not judging those who have to make hard decisions about having children or setting up a DNR, etc.

 

[kellyg403]

It sounds easy to make a decision like this now. The hardest thing I ever did was take my baby off life support. If I knew how his life would end, I would have done things differently I think...However, given the information that I had, we made the best decisions we could both to continue the pregnancy when we found out and then to take him off the ventilator.

I just hope people are taking this kind of decision seriously and not judging those who have to make hard decisions about having children or setting up a DNR, etc.

You are right, taking a child off of life support is something that will change you forever. My dd was here for 18 hours before we were told we needed to take her off life support. The truth of the matter for me is that I treasure those 18 hours more than I treasure any single minute in my life.

This is definitely one of those decisions where no one answer is right for everyone. To decide what is best for you or your family is the only 'right' answer!

Kelly

 

[LuvOrlando]

If there was no hope of changing things then no.

I desperately wanted a big family, I wanted 6 kids. Having DS , my 1st went smoothly. But #2 DD was alarming. I had pre-eclampsia. She was born at 28 weeks. Luckily she was tiny but in perfect health. I know how lucky I was that she wasn't born severely disabled due to a lack of oxygen and there are many many disabilities that occur with preemies. What if my next child had to be delivered even earlier? 28 weeks is cutting it close health wise and not all kids at 28 weeks are ok. After she was born i agonized for years about other children. However, research on pre-eclampsia was pretty sparse. The only data I could find predicted an 80% likelihood of it coming back. It broke my heart but I decided to let go of my dreams of a big family How could I deliberately risk killing myself or a new baby and leaving the 2 children I already had motherless and my DH by himself to raise our babies?

I know in my heart I did the right thing but that didn't make it any easier. Whenever I see big families i still cry.

To all the families out there who have lost children my heart breaks for you.

 

[DizBelle]

Oh I definitely would want to be after he/she was born. But I couldn't get through an entire pregnancy worrying about the 'what ifs'. Each child's situation is so unique that and spectrum is so great you wouldn't know until they got here how disabled they actually were.

After being informed, I would research all of the resources available to me and go from there.

Catch my drift?

Yes, but the sooner you have the information, the better. If you get the information before the baby is born, then you have the luxury of research and preparation without also having to care for a newborn at the same time.

I just don't understand not wanting to have the information as soon as you can (unless the test itself presents a risk).

 

[CF'er]

Having children is a total roll of the dice.

I have a genetic condition. My children are carriers. If my husband were a carrier they would have a 25% chance of having the condition.

We had my husband genetically tested prior to trying to have children. He came up negative so we proceeded. I got preg with twins. They were born premature (didn't have my medical condition) but I still lost one due to the prematurity. So you can plan all you want.... it's out of our hands or control.