Aa
A debateable question ... If you knew even before you got pregnant that something was gonna be wrong with the baby would you still want to have a baby?
This question came up at work yesterday.. A lday I work with is a carrier of the huntingtons disease.. her mother had it... for all of you who don't know what huntingtons disease is... heres a little info
Huntington's disease (HD) results from genetically programmed degeneration of brain cells, called neurons, in certain areas of the brain. This degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance. HD is a familial disease, passed from parent to child through a mutation in the normal gene. Each child of an HD parent has a 50-50 chance of inheriting the HD gene. If a child does not inherit the HD gene, he or she will not develop the disease and cannot pass it to subsequent generations. A person who inherits the HD gene will sooner or later develop the disease. Whether one child inherits the gene has no bearing on whether others will or will not inherit the gene. Some early symptoms of HD are mood swings, depression, irritability or trouble driving, learning new things, remembering a fact, or making a decision. As the disease progresses, concentration on intellectual tasks becomes increasingly difficult and the patient may have difficulty feeding himself or herself and swallowing. The rate of disease progression and the age of onset vary from person to person. A genetic test, coupled with a complete medical history and neurological and laboratory tests, helps physicians diagnose HD. Presymptomic testing is available for individuals who are at risk for carrying the HD gene. In 1 to 3 percent of individuals with HD, no family history of HD can be found.
Is there any treatment?
Physicians prescribe a number of medications to help control emotional and movement problems associated with HD. Most drugs used to treat the symptoms of HD have side effects such as fatigue, restlessness, or hyperexcitability. It is extremely important for people with HD to maintain physical fitness as much as possible, as individuals who exercise and keep active tend to do better than those who do not.
What is the prognosis?
At this time, there is no way to stop or reverse the course of HD. Now that the HD gene has been located, investigators are continuing to study the HD gene with an eye toward understanding how it causes disease in the human body.
Ok with that being said... She doesn't know if she wants to have children because she could pass this genetic disorder on to them.. And it got me thinking If doctors were able to tell you even before you got pregnant that there would be something wrong with the child would you still want to get pregnant..
I want to say yes I would but the more and more I think about it.. the more and more undecided I get... Could I bring a child into this world knowing that there life is gonna be cut short by this disease? Could I live with myself if I would outlive my child??
She is a touch situation so I did not offer my advice because honestly I didn't want to lie to her and say yes you should def. have a child even though it could have this disease because in all honesty I don't know what i would do in her situation.
Huntington's disease (HD) results from genetically programmed degeneration of brain cells, called neurons, in certain areas of the brain. This degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance. HD is a familial disease, passed from parent to child through a mutation in the normal gene. Each child of an HD parent has a 50-50 chance of inheriting the HD gene. If a child does not inherit the HD gene, he or she will not develop the disease and cannot pass it to subsequent generations. A person who inherits the HD gene will sooner or later develop the disease. Whether one child inherits the gene has no bearing on whether others will or will not inherit the gene. Some early symptoms of HD are mood swings, depression, irritability or trouble driving, learning new things, remembering a fact, or making a decision. As the disease progresses, concentration on intellectual tasks becomes increasingly difficult and the patient may have difficulty feeding himself or herself and swallowing. The rate of disease progression and the age of onset vary from person to person. A genetic test, coupled with a complete medical history and neurological and laboratory tests, helps physicians diagnose HD. Presymptomic testing is available for individuals who are at risk for carrying the HD gene. In 1 to 3 percent of individuals with HD, no family history of HD can be found.
Is there any treatment?
Physicians prescribe a number of medications to help control emotional and movement problems associated with HD. Most drugs used to treat the symptoms of HD have side effects such as fatigue, restlessness, or hyperexcitability. It is extremely important for people with HD to maintain physical fitness as much as possible, as individuals who exercise and keep active tend to do better than those who do not.
What is the prognosis?
At this time, there is no way to stop or reverse the course of HD. Now that the HD gene has been located, investigators are continuing to study the HD gene with an eye toward understanding how it causes disease in the human body.
Ok with that being said... She doesn't know if she wants to have children because she could pass this genetic disorder on to them.. And it got me thinking If doctors were able to tell you even before you got pregnant that there would be something wrong with the child would you still want to get pregnant..
I want to say yes I would but the more and more I think about it.. the more and more undecided I get... Could I bring a child into this world knowing that there life is gonna be cut short by this disease? Could I live with myself if I would outlive my child??
She is a touch situation so I did not offer my advice because honestly I didn't want to lie to her and say yes you should def. have a child even though it could have this disease because in all honesty I don't know what i would do in her situation.
sorry- one more post about this one... it sounds like your friend has been tested and was positive for the disease? Then it would be unlikely that she would outlive her child... they are making great medical advances on huntingston, but if she is a "carrier" she will develop the disease, and she will most likely die before her child, who remember still would only have a 50% chance of having it, would even start to develop it...
if your friend hasn't been tested, then your friend still only has a 50% chance of having the disease, it is not a recessive gene- so if she doesn't have it, she won't pass it along... which if this is the case, then any potential children at this point would have about a 25% chance of having it... if you follow the kinda messed up logic there...
if your friend hasn't been tested, then your friend still only has a 50% chance of having the disease, it is not a recessive gene- so if she doesn't have it, she won't pass it along... which if this is the case, then any potential children at this point would have about a 25% chance of having it... if you follow the kinda messed up logic there...
and to clarify--- the disease does not start to show signs typically until 40 to later... some much later... (and a very few earlier)... and you can live for a very long time once you have the symptoms.... the child would not have a disability in your friends case...
Also, there are two ways of having a biological child that you would know for sure was free of the disease: 1. do IVF and have the embryos tested and only implant those free of the disease, or 2. get pregnant and have the amnio to see if the baby had the gene and then abort if the baby did... those two were not ethical options to me personally.... the mutated gene for this disease comes completely from one parent or the other (as all genes do)... thus the 50% chance of passing it on...
Also, there are two ways of having a biological child that you would know for sure was free of the disease: 1. do IVF and have the embryos tested and only implant those free of the disease, or 2. get pregnant and have the amnio to see if the baby had the gene and then abort if the baby did... those two were not ethical options to me personally.... the mutated gene for this disease comes completely from one parent or the other (as all genes do)... thus the 50% chance of passing it on...
I am coming a little late to this discussion- just came across this one...
I am a possible carrier of huntingtons disease... my father had it, and my grandfather- also my uncle and my aunt have it... I have a 4 year old and a 1 year old... my DH and I discussed this issue before we decided if we would have kids... heres the thing... my parents had me... and I am glad they did personally- even if I find out I have huntingston... I have lived such a full life in just the past 32, almost 33 years, and I wouldn't trade a day of it.... I won't get tested because it changes your life if you find out you have it...
IF you have the gene, you will get HD and your kids will have a 50% chance of having it... IF you don't have the gene, end of story- you can't pass it on... my aunt got tested a year ago- she is 45 and thought she'd be showing signs if she had it, and she wasn't, but her kids are in their early 20's now and she wanted to know for sure, so they didn't have to wonder and ask the same questions your friend is--- unfortunatly she tested positive... she is a very strong person, a RN, and she is really really struggling with it... it affected us all... and to what good? now my cousins are in the same situation they were in before, except they now wonder when their mom is going to get sick and die... you can't change the situation...
as you posted, there is no cure, you will die from it... unless of course you--- get hit by a car crossing the street and die, or get cancer, or forget to wear flip flops in the gym and get staph and wait too long to have it treated... you get my point... it is a personal decision, and I wouldn't judge anyone's decision- my mom didn't want us to have kids without being tested... but it wasn't her decision, and I had 2 kids and my other bother, who also has not been tested, had to kids... and she respected our decision and LOVEs her grandkids... and will love them forever--- there was a post a little over a year ago... I posted a response on there to a woman about this subject... the link is below... I am not sure if this girl was for real or not... but my answer to her was very real...
I think it is impossible to give a right or wrong answer on this one... I made mine, and I will never wish I had decided differently... and I don't think my kids will either.
http://www.medhelp.org/posts/show/339318?personal_page_id=4747&post_id=post_2062621
I am a possible carrier of huntingtons disease... my father had it, and my grandfather- also my uncle and my aunt have it... I have a 4 year old and a 1 year old... my DH and I discussed this issue before we decided if we would have kids... heres the thing... my parents had me... and I am glad they did personally- even if I find out I have huntingston... I have lived such a full life in just the past 32, almost 33 years, and I wouldn't trade a day of it.... I won't get tested because it changes your life if you find out you have it...
IF you have the gene, you will get HD and your kids will have a 50% chance of having it... IF you don't have the gene, end of story- you can't pass it on... my aunt got tested a year ago- she is 45 and thought she'd be showing signs if she had it, and she wasn't, but her kids are in their early 20's now and she wanted to know for sure, so they didn't have to wonder and ask the same questions your friend is--- unfortunatly she tested positive... she is a very strong person, a RN, and she is really really struggling with it... it affected us all... and to what good? now my cousins are in the same situation they were in before, except they now wonder when their mom is going to get sick and die... you can't change the situation...
as you posted, there is no cure, you will die from it... unless of course you--- get hit by a car crossing the street and die, or get cancer, or forget to wear flip flops in the gym and get staph and wait too long to have it treated... you get my point... it is a personal decision, and I wouldn't judge anyone's decision- my mom didn't want us to have kids without being tested... but it wasn't her decision, and I had 2 kids and my other bother, who also has not been tested, had to kids... and she respected our decision and LOVEs her grandkids... and will love them forever--- there was a post a little over a year ago... I posted a response on there to a woman about this subject... the link is below... I am not sure if this girl was for real or not... but my answer to her was very real...
I think it is impossible to give a right or wrong answer on this one... I made mine, and I will never wish I had decided differently... and I don't think my kids will either.
http://www.medhelp.org/posts/show/339318?personal_page_id=4747&post_id=post_2062621
It would all depend on the disease or handicap. If it were life threatening and altered your ability to live a somewhat reasonable life, then I think I would opt for adoption. As harsh as it sounds, I am not financially able, or emotionally strong enough, to take care of a child with a disability or handicap. If I were older, and had more means to take care of a child like that, maybe my decision would be swayed in the other direction. But in all reality, there are so many children out there yearning for a family to love them.
I would adopt if I knew that I had a 50/50 chance of passing something on. But I do carry a chromosome abnormality that can cause a genetic disorder in my children and I decided not to have the amnio and Jadyn does not have the disorder.. I believer that everything happens for a reason.. But also think that if my chances were half and half I would just opt for adoption because Im not emotionally or financially ready for a mentally disabled child.. If I were older and more stable maybe I would opt to become pregnant.
Tough ethical dilemma... I didn't do many of the tests with my pregnancies (triple or quad screens) b/c of the incidence of false positives that people we knew had experienced. I did, however, get tested for the Cystic Fibrosis gene b/c if it turned out I was a carrier (as well as my hubby- both have to be)- I wouldn't have wanted any more children.
I feel for your friend in that situation.
I feel for your friend in that situation.
If I had enough money to do genetic testing and do in-vitro fertilization to make sure that the baby would not have the disease then I would say YES HAVE A BABY.
But then again, I am very ambivalent of any fertility treatments, I believe that if a couple truly wants to have children and can't for any reason or another then they should adopt. There's plenty of children in need of parents out there.
But then again, I am very ambivalent of any fertility treatments, I believe that if a couple truly wants to have children and can't for any reason or another then they should adopt. There's plenty of children in need of parents out there.
It would depend on if they could find out through amnio if the baby was a carrier or not (at around 16 weeks) . I had friends who 's first child ended up with a disease that probaly will not see him make it into his teens. When they found out it was inherited they orgianally said no to having another child. BUT they did take that step. It was a hard thing for them. First at 12 weeks they found out it was another boy, which ment a 75% chance of the disease. but they had an amnio done and found out they were all clear. It was tough for them to go though since they didn't tell anyone incase of the other outcome where they would've terminated the baby. It may be harsh, but they couldn't afford another child with the disease, or the heartbreak. OUr friends would've supported her whatever her desicion, they did me when i found out at 19 weeks my baby at a 0% of making it to term, i couldn't deal with the wait for my baby to die aproach so they induced me.
Is adoption an option? or taking in foster children if she loves them that much
Is adoption an option? or taking in foster children if she loves them that much
Thats how I felt too... I mean this is gotta be one of the toughest decisions... The sad thing is she would be a wonderful mother.. she just loves children..
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