View Full Version : Birth Defects
Freitag
06-08-2009, 12:56 PM
I had an interesting conversation today on another comment thread. And I just wanted to get people's thoughts on it.
The originating thread was a discussion about Ryan Dempster, and his daughter, who was born without the ability to swallow. Now, the news story is kind of hazy whether this is a permanent disability or if it can be treated with drugs and surgery.
So another user said:
I pray for his child and family and for submitter to never have to deal with a child born with a chromosomal disorder.
thought my daughter was perfectly healthy...received a tragic diagnosis four days after her birth
This kind of made me curious, so I asked:
Forgive me for not knowing any better, as I'm not a father but I do have plans in the near future... doesn't an amniocentesis check for major chromosomal issues, like Down's, CF, etc?
Other guy responded:
We elected to not do a quad screen which essentially tells you what your risk level is. From there you can choose an amnio, but amnios *can* be lethal to the fetus. We thought since we were in normal child bearing years, there was nothing to worry about. But for us, nothing would have changed since we would not have ended the pregnancy even if we did know.
Fair enough. But then I asked him what his daughter was diagnosed with, thinking it was CF or Down's or something that would lead to at least some sort of life. His response:
Edward's syndrome or Trisomy 18. 90% miscarry or are stillborn. Only 10% make it to their first birthday. Mine went full term and is currently 5 1/2 weeks old. She's beautiful and I absolutely adore her.
Without question, this is the most difficult thing my wife an I have ever endured.
That kind of stunned me. I'm not sure how to respond in this situation. And not your typical "Matty is a Jerk" scenario, it just is reflective of every parent's nightmare, whether if you'd want to know, and how you would proceed if you did know.
landarch
06-08-2009, 01:28 PM
My wife works in a school with nothing but severely autistic of normal school age (7-21). She has several years experience with other disorders also. Downs, CP, and many rare diseases and disorders. I've done several Buddy Walks for Downs Syndrome with her, and have been her listening ear for these horrible stories for the better part of a decade.
Even still, we can not approach this subject when it involves us personally. The nightmare of such a situation is too much to consider. Our first kid is so far healthy and normal. This has made the subject even harder to approach, because we find ourselves comparing our blessings to these unspeakable "what if" scenarios.
No one who hasn't had to face this has any idea what they would do in such a case. Someone on this board has a quote that I have always admired that goes something like "Dr. Hemingway once that 'Every day you just get up'". I guess that's what you'd have to do--then just play the hand you're dealt. Several of the families that my wife has dealt with make the most of what they have, become involved in the cause or shift the focus of their lives to their kid's issues. Others, one in particular comes to mind, cry. All the time, every day. As to whether I'd want to know or not, I say yes. I would like to think that I could use the time btw diagnosis and birth to prepare for the unique journey ahead. Then again, I might just cry--every day.
TripleSkeet
06-08-2009, 01:37 PM
With my first daughter we got a test that came back abnormal for Downs Syndrome. We had 2 choices, get the amnio or wait til birth. We decided to get the amnio. The risk comes from sticking the needle into the belly to get the fluid. If you hit the child you can kill it.
We had to wait 2 weeks. It was the longest 2 weeks of my life. I prayed every night. It was the first time Ive cried in about 17 years. I thought we were being punished because I was dissapointed upon learning we were going to have a girl, I really wanted a boy. We wouldve kept the baby no matter what, its just that you dont want to see your child have to go through such a hard life.
When they did the amnio the baby was on her side making it very easy to get. The tests all came back normal thank God.
For our son we decided to not even get the quad screen. I dont think my wife couldve taken the stress again.
My heart goes out to this guy. I couldnt imagine the pain and fear of putting either of my kids to bed at night, knowing there was a decent chance they wouldnt be alive in the morning.
Heather 8
06-08-2009, 02:35 PM
When I was still in my first trimester with Jack, I learned that I was a carrier for CF, and we had to wait a month to find out if 8 was a carrier as well. If he did, there was a 25% chance that Jack would have been born with CF.
In our case, I would not have chosen termination. That 75% chance of a perfectly healthy baby, along with the fact that I already loved this baby, didn't even make abortion an option for me.
Fortunately, 8's test came back negative. There is still the chance that Jack may be a carrier himself, which is one of many reasons why we decided he will be an only (biological) child.
I just recently read about this very young single mom who was horribly harrassed by some idiots online mocking her for having a daughter born with anencephaly. The baby actually survived (if you can call that "living") 3 months. That defect was an absolute nightmare of mine when I was pregnant, and in that case, I would have chosen to end the pregnancy.
ryno1974
06-08-2009, 04:28 PM
Our thir child was diagnosed with a congenial heart defect at around 5 1/2 months of pregnancy. She was intubated at birth, and was in NICU for a cuple weeks before being flown out to Edmonton for hear surgery. Once there we discovered that he had deletion of 22q11.2 or DiGeorge syndrome. She had multiple surgeres, and spent her whole life in hospital. My wife and I lived away from home for 3 months while our other kids lived with relatives back home, 2 provinces away. She passed away after almost 4 months of fighting.
The hardest decision I have ever made in my life was to end the intervention, and to stop treatment. Thinking about it still makes me cry like a baby, 5 years later. The kick in the balls you feel when your world splits apart around you when you are told these awful things are happening to you s the worst thing in the world.
Kaity would have been 5 this past May 22nd. She should be in junior Kindergarten. She should be playing soccer. She should be getting time outs and getting sent to her room like her brother and sister. She should be hugging me and telling her she loves me.
But shes not.
I love you honey. Daddy misses you.
Everyone out there, hug your kids, even when they are being rotten little brats. In the blink of an eye they could be gone.
Hottub
06-08-2009, 04:53 PM
Jesus, Ryno. I'm really choked up now. Sorry, Bro.
I'm gonna hug my boys right now. Thanks.
cougarjake13
06-08-2009, 04:57 PM
being born with a birth defect im glad my parents didnt abort me
not sure if they had the technology in the late 70's to even know what i had before i was born
ryno1974
06-08-2009, 05:16 PM
What was the defect CougarJake? I'm glad it has worked you for you, its nice to have you here.
ryno1974
06-08-2009, 05:17 PM
Jesus, Ryno. I'm really choked up now. Sorry, Bro.
I'm gonna hug my boys right now. Thanks.
Google "Kaitlyn Meade" - there is tons of stuff out there.
Hottub
06-08-2009, 05:25 PM
I had a very similar story to TripleSkeet's. That one test had me and the wife crying for a month. I was ready to do what I had to do for a special child. The amnio proved otherwise.
Oh yeah, from what I know only from the board, Lucy RULES!!
TripleSkeet
06-08-2009, 06:57 PM
What was the defect CougarJake? I'm glad it has worked you for you, its nice to have you here.
Micro Penis Syndrome.
http://menshealth.about.com/cs/genetics/a/micro_penis.htm
Drunky McBetidont
06-08-2009, 07:00 PM
Micro Penis Syndrome.
http://menshealth.about.com/cs/genetics/a/micro_penis.htm
from what i read from the link it sounds like a clit minus the gash. micropenis > megaballs
biggestmexi
06-08-2009, 07:03 PM
Xander (my son) due to my GFs disease had a 50/50 chance for still born
Drunky McBetidont
06-08-2009, 07:05 PM
most of the defects are genetic. if parents would get screened prior to trying to conceive this would be less of an issue. if we continue the genome project many of these diseases will be a memory.
boosterp
06-08-2009, 08:07 PM
Jeez Ryno, I too got choked up. I wish there was a way I could take yours and your family's pain from you.
biggirl
06-08-2009, 08:15 PM
My cousin has downs syndrome. When I was pregnant with my first baby my ob pushed me into having the blood tests. She made the appointment for me. As the test date approached I just decided to not go. I didn't want to know. It didn't matter to me one way or the other. I didn't want to be pushed by anyone for any reason. The ob kinda chewed me out for missing the appt, but I told her to mind her own business.
5 years after my baby was born we find out he has Aspergers (Autism Spectrum Disorder). What do you do? You deal with it. God gave you this child the way He wanted you to have him/her.
I have a 1 1/2 year old girl too. So far..so good, except she is already way too girly for my liking.
Kris10
06-08-2009, 08:17 PM
I have a 1 1/2 year old girl too. So far..so good, except she is already way too girly for my liking.
I have one of them. Mine is 5 1/2 & wants to join cheerleading. :dry:
boosterp
06-08-2009, 08:28 PM
I have one of them. Mine is 5 1/2 & wants to join cheerleading. :dry:
Oh nooz. We need to introduce her into hunting, stat! Or, softball that would be good.
Kris10
06-08-2009, 08:29 PM
Oh nooz. We need to introduce her into hunting, stat! Or, softball that would be good.
she plays softball now and in place of cheerleading she just joined soccer. i have no idea how to hunt, i can't teach her that :down:
biggirl
06-08-2009, 08:30 PM
I have one of them. Mine is 5 1/2 & wants to join cheerleading. :dry:
Cheerleading isn't too popular in our school district. I hope she chooses Volleyball.
Kris10
06-08-2009, 08:31 PM
Cheerleading isn't too popular in our school district. I hope she chooses Volleyball.
volleyball isn't popular at all here. i don't know if we even have it in our school district, i know it wasn't offered in the same district when i attended.
boosterp
06-08-2009, 08:32 PM
she plays softball now and in place of cheerleading she just joined soccer. i have no idea how to hunt, i can't teach her that :down:
Hmmmm.... well then I might need to fly up. ;)
Kris10
06-08-2009, 08:35 PM
Hmmmm.... well then I might need to fly up. ;)
You could hunt jersey deer or just shovel them off the middle of the road
Stuft
06-08-2009, 08:36 PM
I have one of them. Mine is 5 1/2 & wants to join cheerleading. :dry:
There is no stopping it...i tried. My daughter was a very young *mascot*(young cheerleader) for the town's pop warner football when she was 4...it was ALL downhill from there. She LOVED every second of it, while i tried to gear her towards other things. She's now a 12 yr old elitist...it can't be stopped.
Stuft
06-08-2009, 08:40 PM
5 years after my baby was born we find out he has Aspergers (Autism Spectrum Disorder). What do you do? You deal with it. God gave you this child the way He wanted you to have him/her.
Do you think testing during pregnancy would have given you a heads up? I'm not trying to be insensitive, really, i can't imagine how difficult it must be...but Aspergers isn't something they can tell you about while you're STILL pregnant, i do believe.
Kris10
06-08-2009, 08:43 PM
There is no stopping it...i tried. My daughter was a very young *mascot*(young cheerleader) for the town's pop warner football when she was 4...it was ALL downhill from there. She LOVED every second of it, while i tried to gear her towards other things. She's now a 12 yr old elitist...it can't be stopped.
You've convinced me to never sign her up. I was annoyed with the $120 registration fee and I know that's just the beginning. She can join in middle school if she is still interested.
biggirl
06-08-2009, 08:46 PM
Do you think testing during pregnancy would have given you a heads up? I'm not trying to be insensitive, really, i can't imagine how difficult it must be...but Aspergers isn't something they can tell you about while you're STILL pregnant, i do believe.
no I do not believe you can test for that. Autism and the spectrum disorders are still hard to figure out.
I guess what I meant is that you can get tested for all sorts of things while being pregnant, but that doesn't mean you can take all fears away of having a "normal" child.
biggirl
06-08-2009, 08:49 PM
no I do not believe you can test for that. Autism and the spectrum disorders are still hard to figure out.
I guess what I meant is that you can get tested for all sorts of things while being pregnant, but that doesn't mean you can take all fears away of having a "normal" child.
Did I say that right...it is late..I am tired. To make it simple...you may think you have a normal child while pregnant or at birth, but later you can find out other problems your child has.
Stuft
06-08-2009, 08:49 PM
You've convinced me to never sign her up. I was annoyed with the $120 registration fee and I know that's just the beginning. She can join in middle school if she is still interested.
Oh that fee is not the end of it. You have to sign a waiver saying that if their team makes all states or whatever that youre willing to shell out like 5 thousand bucks to have you and the kid go to competitions in Orlando (or some other shitty touristy place). Yeah, not a parents dream.
You worded it just fine for me to understand. It was an honest question. I can't imagine how exhausting some days must be for you and your family but, from the sounds of it, you all are still truly blessed, which is ALL that matters!!
Kris10
06-08-2009, 08:52 PM
Oh that fee is not the end of it. You have to sign a waiver saying that if their team makes all states or whatever that youre willing to shell out like 5 thousand bucks to have you and the kid go to competitions in Orlando (or some other shitty touristy place). Yeah, not a parents dream.
:furious: Fuck that. I'm sorry your caught up in this mess. I'd ground your daughter for life.
Stuft
06-08-2009, 08:57 PM
:furious: Fuck that. I'm sorry your caught up in this mess. I'd ground your daughter for life.
:laugh: Thank God they sucked and never went to *nationals*. She's still a snot (but a great kid) and i curse that damn decision everytime i have to press her cheerleading outfit!
boosterp
06-08-2009, 09:00 PM
no I do not believe you can test for that. Autism and the spectrum disorders are still hard to figure out.
I guess what I meant is that you can get tested for all sorts of things while being pregnant, but that doesn't mean you can take all fears away of having a "normal" child.
It does fit into that array, therefore is hard to pinpoint. We know what can cause it but we are uncertain exactly besides genetics as to the cause much less how to treat it in vitro.
Stuft
06-08-2009, 09:05 PM
Besides genetics? Really? I'm in with the issues stemming from MMR injections, myself. I, however, do not have a medical background. Just a broad w/ a brain, that can decipher the research that's out there.
boosterp
06-08-2009, 09:12 PM
Besides genetics? Really? I'm in with the issues stemming from MMR injections, myself. I, however, do not have a medical background. Just a broad w/ a brain, that can decipher the research that's out there.
MMRs use to use a tiny amount of mercury as a preservative, not so in today's medicine. CDC (http://www.cdc.gov/vaccinesafety/concerns/mmr_vaccine.htm)
Stuft
06-08-2009, 09:25 PM
MMRs use to use a tiny amount of mercury as a preservative, not so in today's medicine. CDC (http://www.cdc.gov/vaccinesafety/concerns/mmr_vaccine.htm)
I do appreciate your expertise in this area, it's something that greatly interests me because of how elusive the answer is...BUT...the most recent case study, in that post, basically, states that it's inconclusive. There is NO definitive answer, yet, and i just don't get how that's the case, given the ridiculous increase in autism(as broad as it may be). Is it the diagnosis process that's at fault, for the dr's to simply cover their asses for insurance reasons?
Freitag
06-09-2009, 05:33 AM
Besides genetics? Really? I'm in with the issues stemming from MMR injections, myself. I, however, do not have a medical background. Just a broad w/ a brain, that can decipher the research that's out there.
...you're actually buying into what Jenny McCarthy is saying?
Freitag
06-09-2009, 05:49 AM
Before this turns into a vaccines cause autism clusterF, I just want to refer back to this post made last year regarding this subject:
So I guess my problem is that I think people who blame vaccines and don't want to acknowledge that we don't actually know enough about autism to say anything for sure have blinders on. Citing statistical studies is not proof. Correlation does not imply causation. There are a variety of other environmental, genetic, and neurological factors at work, and I think it's questionable to attribute a complex disorder to just one thing. It's possible vaccines have something to do with it. It's also possible they don't, and it bothers me that anti-vaccination people don't want to acknowledge that. I also think it's dangerous to frighten parents away from inoculating their kids against serious childhood illnesses.
topless_mike
06-09-2009, 07:59 AM
this is really tough to answer, especially since my wife is about to pop any day now. i saw this thread, and tried really hard to avoid it, but couldn't. its every parents nightmare, even just seeing the words.
for me, if i knew that there was going to be a major problem, i would abort.
i dont think i could go through life everyday watching my child struggle, knowing that i was to blame (partially, since its half my genes in there).
good thread, matty.
Aggie
06-09-2009, 08:19 AM
I've thought about this a lot. At first I thought I would refuse the tests altogether because I won't be able to abort no matter what I found out. But then I realized if there was something wrong wouldn't it be better to be prepared for it and educate myself on the topic? I still don't know.
You've convinced me to never sign her up. I was annoyed with the $120 registration fee and I know that's just the beginning. She can join in middle school if she is still interested.
Don't give in! My mom refused to let me be a cheerleader and I'm so glad she did. Stay strong.
RoseBlood
06-09-2009, 08:39 AM
I've thought about this a lot. At first I thought I would refuse the tests altogether because I won't be able to abort no matter what I found out. But then I realized if there was something wrong wouldn't it be better to be prepared for it and educate myself on the topic? I still don't know.
That's pretty much how I feel about the tests.
Don't give in! My mom refused to let me be a cheerleader and I'm so glad she did. Stay strong.
Can we trade moms? My mom made me be a cheerleader cause she was one. :dry:
But I quit before I got into high school. :thumbup:
PerryWinkle
06-09-2009, 08:44 AM
That's pretty much how I feel about the tests.
Can we trade moms? My mom made me be a cheerleader cause she was one. :dry:
But I quit before I got into high school. :thumbup:
quitter....:nono:
Freitag
06-09-2009, 08:47 AM
Wrong forums. n/m
Freitag
06-09-2009, 08:56 AM
edit: and people say the mods don't work around here.
ryno1974
06-09-2009, 10:23 AM
this is really tough to answer, especially since my wife is about to pop any day now. i saw this thread, and tried really hard to avoid it, but couldn't. its every parents nightmare, even just seeing the words.
for me, if i knew that there was going to be a major problem, i would abort.
i dont think i could go through life everyday watching my child struggle, knowing that i was to blame (partially, since its half my genes in there).
good thread, matty.
I guess the fact that we have choices in life is what makes our countries great places to be. Topless Mike you say you would abort if you knew there were problems. Is this your first child? I ask because I used to be a fairly big supporter of the pro-choice movement until I had kids. I now cant imagine makeing that choice, knowing what I know now.
The other part of the moral conundrum is defining what is "a major problem". Life is what you make of it. My wife and I knew that if our daughter survived she would have issues her whole life, probobly never being "normal". We were prepared to give her the best life we could, based on the realities we had at hand. Some would say being blind is a major problem, Steview Wonder has managed nicely. Deaf? Lou Ferrigno, Matt Hammil (UFC). Look at Steven Hawking, He's all F'ed up but has led an amazing life.
I guess what I am saying is that it is all very complex and heart wrenching. I wish I werent posting this right now, I wish I was still blissfully unaware of any of this kind of shit and had simply skipped over this post looking for the booby post or dumb joke on here.
By the way, Congrats on the upcoming babe Topless Mike. Or should I say Sleepless Mike?
:smile:
topless_mike
06-09-2009, 10:52 AM
I guess the fact that we have choices in life is what makes our countries great places to be. Topless Mike you say you would abort if you knew there were problems. Is this your first child? I ask because I used to be a fairly big supporter of the pro-choice movement until I had kids. I now cant imagine makeing that choice, knowing what I know now.
The other part of the moral conundrum is defining what is "a major problem". Life is what you make of it. My wife and I knew that if our daughter survived she would have issues her whole life, probobly never being "normal". We were prepared to give her the best life we could, based on the realities we had at hand. Some would say being blind is a major problem, Steview Wonder has managed nicely. Deaf? Lou Ferrigno, Matt Hammil (UFC). Look at Steven Hawking, He's all F'ed up but has led an amazing life.
I guess what I am saying is that it is all very complex and heart wrenching. I wish I werent posting this right now, I wish I was still blissfully unaware of any of this kind of shit and had simply skipped over this post looking for the booby post or dumb joke on here.
By the way, Congrats on the upcoming babe Topless Mike. Or should I say Sleepless Mike?
:smile:
This will be our 2nd... Oldest just turned 4.
Still doesnt change my thoughts, though.
Freitag
06-09-2009, 11:23 AM
The other part of the moral conundrum is defining what is "a major problem". Life is what you make of it. My wife and I knew that if our daughter survived she would have issues her whole life, probobly never being "normal". We were prepared to give her the best life we could, based on the realities we had at hand. Some would say being blind is a major problem, Steview Wonder has managed nicely. Deaf? Lou Ferrigno, Matt Hammil (UFC). Look at Steven Hawking, He's all F'ed up but has led an amazing life.
Just as some clarification - Stevie Wonder was premature; not entirely a chromosonal birth defect. Ferrigno lost his hearing at the age of 3 because of an ear infection. Again, not a chromosonal birth defect.
And Steven Hawking, who is "all f'ed up" as you put it has ALS. Lou Gherig's disease. He was basically normal and mobile just as anyone else until his mid-20's.
Ryno, Katy had the same condition that was diagnosed for Ryan Dempster - DiGeorge.
There's a lot of hard, tough questions you have to ask which is maybe the suggestion of getting screened BEFORE conception and coming up with an action plan may be a good idea. I didn't know getting screened before conception was available, though.
~Katja~
06-09-2009, 11:32 AM
Before this turns into a vaccines cause autism clusterF, I just want to refer back to this post made last year regarding this subject:
there were a few posts and news reports on the subject that cleared former "studies" from being real. I don't believe in vaccines being the cause for autism nor are there any legitamate studies proofing that fact.
ryno1974
06-09-2009, 12:16 PM
Just as some clarification - Stevie Wonder was premature; not entirely a chromosonal birth defect. Ferrigno lost his hearing at the age of 3 because of an ear infection. Again, not a chromosonal birth defect.
And Steven Hawking, who is "all f'ed up" as you put it has ALS. Lou Gherig's disease. He was basically normal and mobile just as anyone else until his mid-20's.
Ryno, Katy had the same condition that was diagnosed for Ryan Dempster - DiGeorge.
There's a lot of hard, tough questions you have to ask which is maybe the suggestion of getting screened BEFORE conception and coming up with an action plan may be a good idea. I didn't know getting screened before conception was available, though.
Thanks for clarifying for me. I (obviously) am not the smartest guy in the world and was grabbing some obvious examples that were clearly not quite on the money.
Appreciate the clarification.
Again, life whether it is at conception or later in life is unpredictable and seemingly random. I guess if any of us really knew the answers we wouldnt be posting away on a message board but out making a difference in the world.
That being said, it is nice to have the buddays here at .net to bounce stuff off. It gives you different perspectives and thoughts almost immediately, kind of like having a few thousand friends hanging around to chat with.
topless_mike
06-09-2009, 12:17 PM
Thanks for clarifying for me. I (obviously) am not the smartest guy in the world and was grabbing some obvious examples that were clearly not quite on the money.
Appreciate the clarification.
Again, life whether it is at conception or later in life is unpredictable and seemingly random. I guess if any of us really knew the answers we wouldnt be posting away on a message board but out making a difference in the world.
That being said, it is nice to have the buddays here at .net to bounce stuff off. It gives you different perspectives and thoughts almost immediately, kind of like having a few thousand friends hanging around to chat with.
we are always here...
ryno1974
06-09-2009, 12:23 PM
we are always here...
Fuck that .gif in your signature is hilarious - even more so if you have kids.
cougarjake13
06-11-2009, 05:47 PM
What was the defect CougarJake? I'm glad it has worked you for you, its nice to have you here.
http://en.wikipedia.org/wiki/Syndactyly
WhistlePig
06-13-2009, 05:25 PM
Our thir child was diagnosed with a congenial heart defect at around 5 1/2 months of pregnancy. She was intubated at birth, and was in NICU for a cuple weeks before being flown out to Edmonton for hear surgery. Once there we discovered that he had deletion of 22q11.2 or DiGeorge syndrome. She had multiple surgeres, and spent her whole life in hospital. My wife and I lived away from home for 3 months while our other kids lived with relatives back home, 2 provinces away. She passed away after almost 4 months of fighting.
The hardest decision I have ever made in my life was to end the intervention, and to stop treatment. Thinking about it still makes me cry like a baby, 5 years later. The kick in the balls you feel when your world splits apart around you when you are told these awful things are happening to you s the worst thing in the world.
Kaity would have been 5 this past May 22nd. She should be in junior Kindergarten. She should be playing soccer. She should be getting time outs and getting sent to her room like her brother and sister. She should be hugging me and telling her she loves me.
But shes not.
I love you honey. Daddy misses you.
Everyone out there, hug your kids, even when they are being rotten little brats. In the blink of an eye they could be gone.
Sorry I'm late to this thread. Your post broke my heart, Ryno! So sorry you had to go through this. I'm of the same mind. Even though I got pregnant late (at age 40) I chose not to get an amniocentesis. There was no way I was going to abort, no matter what was wrong, so I didn't need to know anything ahead of time.
My heart goes out to you and your family.
I'll add to this thread, although to tell you the truth, I hesitate.
I have an unusual perspective.
One of the first jobs I got out of college was working in a cytogenetics lab, analyzing chromosomes. In our lab we also did alpha feto protein and tay sachs testing.
It is a very difficult thing for parents to go through. Yes there is an increased risk of miscarriage with amnio - that is why it isn't a common procedure, but it is recommended for those with high risk pregnancies. There are also many abnormalities that may show up that don't necessarily make for a problem - for example you may have genes flipped on a chromosome but it's not a known issue, in which case the first thing they do is check the parents and see if one of them has the same issue - if they are fine, it means nothing.
What to do if there is an issue is a personal matter and depends on what it is. For example, Tay Sachs babies live a short horrible life. Down syndrome babies can live many years and often are very happy.
I said I had an unsual perspective. It's not just the job I had. Years later one of my children was born with "issues". She has no known syndrome, and it could not have been seen on an amnio. She also got meningitis at a very young age and we don't know if this affected her. It is not easy. I do love her very much though. I also have picked up a different perspective. I see some of the other children in her school, and I see children with much worse problems. I really have taken on the perspective of "be happy for what you have, and not what you don't".
well,
hopefully I don't regret sharing this personal story here.
Tenbatsuzen
06-14-2009, 03:44 PM
well,
hopefully I don't regret sharing this personal story here.
It's OK. Kids for the most part are off-limits. You're still old, and that's all the ammo we need.
JackieJokeMan
06-14-2009, 06:14 PM
I would abort at the slightest hint of a birth defect.
Not only would it be doing the kid a favor, it would also be doing his siblings a favor.
No one stops to consider the effect on the other kids in the family. They are doing to have to take care of the birth defect child long after mom and dad are long gone.
Kris10
06-14-2009, 06:42 PM
I'll add to this thread, although to tell you the truth, I hesitate.
I have an unusual perspective.
One of the first jobs I got out of college was working in a cytogenetics lab, analyzing chromosomes. In our lab we also did alpha feto protein and tay sachs testing.
It is a very difficult thing for parents to go through. Yes there is an increased risk of miscarriage with amnio - that is why it isn't a common procedure, but it is recommended for those with high risk pregnancies. There are also many abnormalities that may show up that don't necessarily make for a problem - for example you may have genes flipped on a chromosome but it's not a known issue, in which case the first thing they do is check the parents and see if one of them has the same issue - if they are fine, it means nothing.
What to do if there is an issue is a personal matter and depends on what it is. For example, Tay Sachs babies live a short horrible life. Down syndrome babies can live many years and often are very happy.
I said I had an unsual perspective. It's not just the job I had. Years later one of my children was born with "issues". She has no known syndrome, and it could not have been seen on an amnio. She also got meningitis at a very young age and we don't know if this affected her. It is not easy. I do love her very much though. I also have picked up a different perspective. I see some of the other children in her school, and I see children with much worse problems. I really have taken on the perspective of "be happy for what you have, and not what you don't".
well,
hopefully I don't regret sharing this personal story here.
Really tough job you had and I hope your daughter is doing well.
My mother had meningitis this past September and has gone down hill since. She's had a lot of health issue since then & is no longer capable of working. I had no idea how badly it effected the immune system till I watched my mother suffer through it.
Sarge
06-14-2009, 07:03 PM
When my wife was pregnant, we chose not to have an amnio test. Everything went according to plan and the kids (twins) were delivered no problem through a C-section. One of my daughters always appeared to have a tightness on her right side. Her arm and leg just didn't seem right, but we figured it was something she would grow out of. A couple of months later it still hasn't gone away, and she begins to exhibit signs of seizure activity. When we took her to the E.R. they did a CAT scan and found she had a massive stoke that affected the left frontal lobe of the brain. The doctors can't tell for sure when it happened, but believe it happened in the womb. She began all types of therapy, and is doing great and the seizure are controlled. They said she wouldn't walk until she was 5 0r 6 years old, her P.T. had he walking at around 2. I don't know if you would call this a birth defect, and an amnio would not have indicated any problem.
Really tough job you had and I hope your daughter is doing well.
My mother had meningitis this past September and has gone down hill since. She's had a lot of health issue since then & is no longer capable of working. I had no idea how badly it effected the immune system till I watched my mother suffer through it.
Well, my portion of the job wasn't so hard in that I was the one doing the lab work - not discussing options with families.
Meningitis can be a real bitch. there is nothing in the world like taking your little daughter to a hospital with her looking like a rag doll- ie no motor control at all. Scary stuff. That led to seizures, so she has been on depakote ever since. However as I said, she is a sweet cute child and as we see, it could always be worse. People lose children or parents young - just be happy for what we have, and enjoy our family every day.
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