# Facing possible Down's Syndrome diagnosis



## johnnycomelately (Oct 30, 2010)

My wife got pregnant at 42 despite being told that pregnancy for her was impossible at this stage, due to past medical history. She was already 17 weeks by the time we figured out she was actually pregnant. After the initial shock we are both very happy about this late addition; we already have two kids who are 11 and 13.

Blood tests have shown that there is a 1:27 chance the baby will have Down's and an amniocentesis was done last Wednesday. We will get the results this coming week.

We have decided to terminate if Down's is confirmed. I wanted to know if anyone has any experience of termination at this late stage. What should I expect and how do I best support her?


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## golfergirl (Dec 8, 2010)

johnnycomelately said:


> My wife got pregnant at 42 despite being told that pregnancy for her was impossible at this stage, due to past medical history. She was already 17 weeks by the time we figured out she was actually pregnant. After the initial shock we are both very happy about this late addition; we already have two kids who are 11 and 13.
> 
> Blood tests have shown that there is a 1:27 chance the baby will have Down's and an amniocentesis was done last Wednesday. We will get the results this coming week.
> 
> We have decided to terminate if Down's is confirmed. I wanted to know if anyone has any experience of termination at this late stage. What should I expect and how do I best support her?


I had a medical termination due to child having condition incompatible with life at 26 weeks. I had to be induced and deliver. My own personal thoughts on this, IRL, say you lost baby instead of explaining situation and choice. You will get a lot of judgement and cruel comments during an already difficult time and it is nobody's business. 
I had last child at 42 and didn't have any of the tests. Didn't want to be faced with any decision and decided to take whatever came my way.
_Posted via Mobile Device_


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## MSP (Feb 9, 2012)

Don't abort. You will live to regret it, if you are anything like the 97% of people who go down that path. 

The test can be a false positive for Down's. 

And who says that someone with Down's Syndrome can't live a happy and fulfilled life? They are just as capable of loving and being loved as anyone else. What is more important that that in this life?


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## golfergirl (Dec 8, 2010)

MSP said:


> Don't abort. You will live to regret it, if you are anything like the 97% of people who go down that path.
> 
> The test can be a false positive for Down's.
> 
> And who says that someone with Down's Syndrome can't live a happy and fulfilled life? They are just as capable of loving and being loved as anyone else. What is more important that that in this life?


Was also going to add if test that showed results was a triple or quad screening, a lot of doctors don't even do those anymore due to their false results.
_Posted via Mobile Device_


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## johnnycomelately (Oct 30, 2010)

golfergirl said:


> I had a medical termination due to child having condition incompatible with life at 26 weeks. I had to be induced and deliver. My own personal thoughts on this, IRL, say you lost baby instead of explaining situation and choice. You will get a lot of judgement and cruel comments during an already difficult time and it is nobody's business.
> I had last child at 42 and didn't have any of the tests. Didn't want to be faced with any decision and decided to take whatever came my way.
> _Posted via Mobile Device_


We live in Europe where people are a lot less judgemental about abortion. I have absolutely no problem stating that we will terminate if the diagnosis is confirmed and will be open with people afterwards, as will my wife. 

I am hoping that a D & E will be the procedure they choose if it comes to it. It seems to be the least traumatic option at this stage.


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## Coffee Amore (Dec 15, 2011)

You'll know for sure with the amnio results. That's an actual test that can confirm Down's Syndrome unlike the triple or quad screening which only shows probabilities.

I wish you and your wife all the best. I hope people who post to this thread will keep their personal and religious beliefs out, but I fear some will not.


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## johnnycomelately (Oct 30, 2010)

Coffee Amore said:


> You'll know for sure with the amnio results. That's an actual test that can confirm Down's Syndrome unlike the triple or quad screening which only shows probabilities.
> 
> I wish you and your wife all the best. I hope people who post to this thread will keep their personal and religious beliefs out, but I fear some will not.


The screening tests have been done and show high risk. The amnio will be definitive. 

Thanks for your concern. We are clear on the morality of this decision so I won't be affected by those who disagree. My main concern is getting my wife through this with the least suffering possible.


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## hambone (Mar 30, 2013)

johnnycomelately said:


> The screening tests have been done and show high risk. The amnio will be definitive.
> 
> Thanks for your concern. We are clear on the morality of this decision so I won't be affected by those who disagree. My main concern is getting my wife through this with the least suffering possible.


What's your wife's nature? My wife is much better able to let things go that she cannot control than I am..

She makes decisions and she doesn't look back. I tend to turn things over and over in my heard... wondering if there was a choice that we didn't think of. I guess, I'm trying to make sure if I ever face that situation again.. would I do anything different.

She doesn't do that.


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## northernlights (Sep 23, 2012)

Don't worry too much yet. The formula the screening test uses to interprets risk inputs the mother's age, so it's automatically going to come back a lot higher than the same levels in a younger woman. On top of that, you're probably estimating the baby's age based on a fairly recent ultrasound, right? That can be off by a few weeks even at this early stage, which can make your Down's risk appear elevated. So, try to not stress too much while you wait for the amnio results.


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## johnnycomelately (Oct 30, 2010)

hambone said:


> What's your wife's nature? My wife is much better able to let things go that she cannot control than I am..
> 
> She makes decisions and she doesn't look back. I tend to turn things over and over in my heard... wondering if there was a choice that we didn't think of. I guess, I'm trying to make sure if I ever face that situation again.. would I do anything different.
> 
> She doesn't do that.


There is no question of us keeping the baby if it is confirmed Down's. She is absolutely clear on that and so am I. 

What I am looking for is advice about different abortion procedures and how best to help her if that is what happens.


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## SimplyAmorous (Nov 25, 2009)

johnnycomelately said:


> We are clear on the morality of this decision so I won't be affected by those who disagree. My main concern is getting my wife through this with the least suffering possible.....
> 
> There is no question of us keeping the baby if it is confirmed Down's. She is absolutely clear on that and so am I.


 I sympathize on how difficult this must be....just wanting to get through it as best you can & alleviate your wife's suffering... 

Our last child I traveled to a Big Hospital & had a Level 3 ultrasound done...I was 40...it came out good so I didn't opt for the Amnio, but had it not....most definitely....... 

Even though I was a Believer for yrs & the majority around us would judge these situations - if a couple choose termination..... Me & mine NEVER felt that way..... we felt EXACTLY as you & your wife....and strongly .....It is good you are on the same page....this will help you both get through it ...IF it comes to this end. Though I wish you good results !

Here is an article that might help >>

Abortion Procedures Explained - Pregnancy Resource Center of Santa Cruz


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## Lyris (Mar 29, 2012)

If its similar to where I live - Australia - she will need to be induced and she will go through labour and give birth.

I think to support her in the same way as you would for a stillbirth. There are some great resources around for dealing with that, we have | Sids and Kids here, I'm sure there's something similar there. 

There should be a social worker at the hospital who can help too, with resources for grief counselling etc. I know a lot of people like to have photos to keep, but you might not want that in this situation, I don't know.

I'm sure there must be forums for people who ave made this decision also, I'm sure they would have some good advice too.

I'm very sorry you and your wife are faced with this.


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## johnnycomelately (Oct 30, 2010)

Lyris said:


> If its similar to where I live - Australia - she will need to be induced and she will go through labour and give birth.
> 
> I think to support her in the same way as you would for a stillbirth. There are some great resources around for dealing with that, we have | Sids and Kids here, I'm sure there's something similar there.
> 
> ...


Thanks for the response. We live in Spain, where the healthcare system is excellent, but the family is expected to play the role that would be played by support staff in the Anglo-Saxon world. The results will be given to me over the phone, rather than in an office with a counsellor present. 

I am hoping that if it comes to it, they will offer a D&E rather than inducement. We haven't discussed that with the doctors yet, as they say for now they are treating it as a normal pregnancy.


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## Lyris (Mar 29, 2012)

How many weeks is she?


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## Holland (Aug 20, 2012)

At the stage she is at I'm sorry to say but it would most likely be that she is induced and will go through a live birth.

I really am sorry to hear this and hope the outcome is good for you. Like the others said at this age the odds are higher which reflects in the test but it may not be the case.

I have a friend that went through this situation and a D&C is not an option. Not wanting to worry you but if you are after advice to care for your wife I would suggest it is going to be her mental health you will need to consider far more than her physical health, women are made for having babies so that part she will recover from.

Be there for each other.


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## alte Dame (Aug 7, 2012)

You have to be prepared for depression, for both of you. She will have hormonal effects, which can themselves initiate depression. Make sure that this potentiality is on your radar screen.

Otherwise, it is extremely difficult to predict exactly how she will react. She could manage it well psychologically right now, but have PTSD-like effects much later. She could be emotionally well-adjusted about it & go through a grieving process that is healthy and normal. You may also grieve.

If it comes to termination, just stay alert and try not to detach from her, even if she insists that that is what she wants. Stay tuned in as much as possible. Get whatever outside help is available where you are. She might need a neutral party to just grieve with and vent to.


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## Maricha75 (May 8, 2012)

Johnny, I cannot even imagine what you are going through right now. I don't think I could ever make the decision you two have, but I don't fault you for it. Just be prepared for the emotions she, and even you, will likely run through. I am so sorry you are dealing with this situation.


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## Thound (Jan 20, 2013)

You and your family are in my prayers.


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## golfergirl (Dec 8, 2010)

Plan if you want to see, hold and name your child. I had depression, isolation (self induced), insomnia and post-part bleeding, my milk came in. I don't wish it on anyone. Praying for good test results
_Posted via Mobile Device_


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## DSMommyof4 (Jun 10, 2013)

I pray, and I mean PRAY, that this sweet and innocent baby does NOT have Down syndrome! Not because I think this child is any less if it does, but because that is the only way that it's life will be spared.

I type this in tears because my heart aches for you. Not for the decision that you "have" to make, but because it shouldn't even be one. I have a sweet 7 month old baby boy who happens to have Down syndrome and is on a normal/typical scale with everything from smiling to rolling over to sitting...he is amazing. The worst of his health problems is reflux, which my oldest had when he was a baby! Our lives have not changed much on a day to day basis. Well, I take that back. They have changed dramatically! Because he has pulled apart a part of me that I did not know existed before him. I am changed, my husband is changed, and so are my other three children. I feel honored to have been chosen as his parent and can't wait to see him accomplish everything that he wants! He does not "suffer" from Down syndrome either. He is one happy baby and no less deserving of a life than any other child. Just because he has one extra chromosome does not make him less of a baby. In fact, he is 101% you and your wife...he has even more of your DNA within him. 

I will pray hard for you and your family. I hope that this test comes back negative because if you cannot see the gift that you could possibly be given and just disregard it, then it is in that innocent baby's best interest to be born in what you would consider "normal" terms. Please feel free to contact me if you have any questions or would like more insight.


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## amlof10 (Jun 10, 2013)

I am literally ready to start weeping. Can I *beg* you not to abort? We have a daughter who was not diagnosed prenatally despite all the great testing. It was a surprise and we went through some emotional turmoil. However, we would change NOTHING about her. She could not be more beautiful. She could not be more loved. We've had a few bumps medically but compared to what some parents go through with things like autism or life threatening food allergies, they are minor and temporary. She has blown so many stereotypes out of the water for so many people, including me - and I'm a trained childhood educator! I can't begin to describe what a blessing she is to our whole family and our friends and neighbors. All the negatives I have heard are completely false or completely exaggerated. I know it's a shock initially and there is always the "We don't think we can handle this." swirl of emotions and thoughts. But, I'll tell you a secret. We all go through that but the bottom line is - it's your baby and who wouldn't do anything for their baby when it comes down to it? I can promise you that every aching moment we have gone through is but a distant memory already and have made her life all the more precious to us. It has changed us for the better. I could write a book about our journey with her already and she's only 5. Please, please, please don't deny your family what could be the most wonderful gift you could have.


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## Homemaker_Numero_Uno (Jan 18, 2011)

I had an inducement due to amniotic banding, at nearly 20 weeks. I used a lot of Demerol, but it wasn't painful. I just wanted to check out. The room was comforting though, Winnie the Pooh decor. I made the nurse hold my hand...support is really critical for the woman. Afterwards a doctor friend of mine gave me some meds to make my milk dry up, and also for stool softener, which is to go easy on the privates after delivery. Why add insult to injury...cervix does not need to be 10 cm but even if they think all of the placenta comes out make sure they do a D & C afterwards because even a little bit of retained placenta can cause infection, severe bleeding and even death (I got to experience all that but the death, it took an emergency D & C and 5 pints of blood and a couple months in the hospital plus a few months of rehab to make it right.) Basically when a woman gets pregnant, she is at high risk period, for a whole bunch of problems. DS is the least of the worries, but an understandable one. You might check with the siblings regarding care-taking since they are the ones who will do it when you and your W are too old to. You would only be doing it for 20 years or so. And honestly, care taking of DS is not a big hassle as compared to so-called normal kids who get involved with drugs, want driver's licenses, go to college and change majors 5 times, and then decide to have their own babies. :-o 

I had three kids after I lost my first. Uterus and female bits were saved by competent surgery (during which I woke up in the OR...) My second child had a tethered spinal cord. The quad screen was high for him but an ultrasound looked normal enough so I didn't terminate. He is high IQ and a talented artist. The defect wasn't diagnosed until he was 7, but he sure had a lot of issues due to it.

Be advised that anyone can suffer a brain injury or any other kind of injury at any time, which can result in care-giving, and old age will happen regardless and require caregiving. But I understand wanting to make a choice, given that you have access to one. 50 years ago or even less you would not know and just deal with what came along. Now we have medical science and we think we have control over a lot of things that we don't. 

Make sure you learn about the risks of whatever procedure W does have, if any. And/or pregnancy, childbirth and some kind of permanent birth control if you are done having kids (maybe you could step forward for that.)

The other thing is that there were medical photos taken that I had access to later, and also I held and examined. So I was able to see that the reason for the termination actually did exist. This is important to avoid second-guessing and well, my doctor told me that the chief geneticist's wife had a similar termination and refused to examine and later went nuts. Because she was convinced that she had aborted a perfectly good baby :-( So I held mine and unwrapped and went over each and every fatal defect and necrotic limb and so forth with the doctor and nurse. (I could tell the nurse was grossed out, maybe she needed some Demerol? But it was my right and it was for my benefit...) I kept the photos for a while until I didn't need them any more. Then I shredded them. I was glad to have them for the time that I did.


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## Maricha75 (May 8, 2012)

Ok, Johnny, I am first going to apologize for what I am about to say. This has NO bearing on you, nor on your wife.

I could never choose to abort a baby of my own, had I ever been told there was a chromosomal abnormality, or even a potential abnormality. But, I am only me. I am not Johnny. I am not his wife. I have NO RIGHT to judge a decision they made TOGETHER. To those who are begging them to change their minds... do you REALLY think this was an easy choice for them? You know what I pray? I pray that you will show compassion for a couple who is making a difficult decision for THEIR family. THEIRS, NOT YOURS. 

Perhaps the test will show the baby is not DS. Perhaps it will show the baby IS DS. Really, all Johnny has asked is how to help his wife through this. It is not your decision. It is not my decision. It is theirs. Now, if you do not have any advice on how to help his wife afterward, should this prove to be the case, might I suggest you skip over this thread since it is likely to bring you to tears, again? Thank you.


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## Coffee Amore (Dec 15, 2011)

Maricha75 said:


> Ok, Johnny, I am first going to apologize for what I am about to say. This has NO bearing on you, nor on your wife.
> 
> I could never choose to abort a baby of my own, had I ever been told there was a chromosomal abnormality, or even a potential abnormality. But, I am only me. I am not Johnny. I am not his wife. I have NO RIGHT to judge a decision they made TOGETHER. To those who are begging them to change their minds... do you REALLY think this was an easy choice for them? You know what I pray? I pray that you will show compassion for a couple who is making a difficult decision for THEIR family. THEIRS, NOT YOURS.
> 
> Perhaps the test will show the baby is not DS. Perhaps it will show the baby IS DS. Really, all Johnny has asked is how to help his wife through this. It is not your decision. It is not my decision. It is theirs. Now, if you do not have any advice on how to help his wife afterward, should this prove to be the case, might I suggest you skip over this thread since it is likely to bring you to tears, again? Thank you.


:iagree:

Johnny and his wife aren't asking people to change their minds if the test result shows DS. It only adds to their pain and the difficulty of their decision when people beg them to change their minds. It's not my decision, it's not the decision of anyone else on this board. He's asking for how he can support his wife and whether anyone has gone through something at this (17 weeks) in the pregnancy.


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## Lyris (Mar 29, 2012)

I've been thinking about this and if i were in your wife's position what I think I would need would be lots of hugs and for my husband to be open emotionally and tell me he felt really sad too. I'd like him to tell me that he's proud of how I'm handling things. To tell me he loves me more often than usual.

I would like for domestic things to be taken care of for a couple of weeks after the termination. So cleaners, a roster of friends to bring meals or a paid meal service, someone to handle the washing, shopping etc. 

And I would like something nice to look forward to. A holiday maybe, in a month or so. 

I also might like to have the possibility of another baby in the future. At least not to have the prospect totally off the table. 

I don't know if your wife would respond to the same things, maybe she's more of a get it done and get over it type. But I thought I'd offer my thoughts in case they were helpful.


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## johnnycomelately (Oct 30, 2010)

Thanks for all the comments. And please don't worry about me being upset with the begging to reconsider, I anticipated that. We had another discussion last night and my wife is certain that she will opt for abortion if the baby has Down, Edward's or Patau. Nothing is going to change our minds. 93% of women in Europe make the same decision.

Thanks for the comments on depression. I am going to do all that I can to prepare her and make sure that our families are available to comfort her. Of course we still hold out hope that all is well.

Do you think she will need to take a significant amount of time off work?


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## Lyris (Mar 29, 2012)

If she is past 20 weeks and has to go through labour and birth, I think you should anticipate that she will need a similar recovery time physically as if she had given birth at full term. It won't be like an early abortion, where you basically only need a few days. I would think she'd need at least three weeks. Even then, she'll still be bleeding probably. Think back to when she had your other children. Did she bounce back quickly? Keep in mind she's older now.

I really hope none of this is necessary.


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## johnnycomelately (Oct 30, 2010)

Lyris said:


> If she is past 20 weeks and has to go through labour and birth, I think you should anticipate that she will need a similar recovery time physically as if she had given birth at full term. It won't be like an early abortion, where you basically only need a few days. I would think she'd need at least three weeks. Even then, she'll still be bleeding probably. Think back to when she had your other children. Did she bounce back quickly? Keep in mind she's older now.
> 
> I really hope none of this is necessary.


Yes, she bounced back quickly, but of course the experience was entirely positive. She is fit, healthy and well-balanced so I think she will deal with it as well as is possible, but I want to be prepared for the worst.


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## 827Aug (Apr 27, 2008)

When do you expect to have the test results back? Wishing you and your wife the best and hope the "waiting" won't be long.


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## johnnycomelately (Oct 30, 2010)

827Aug said:


> When do you expect to have the test results back? Wishing you and your wife the best and hope the "waiting" won't be long.


Thanks. The results should be back before Wednesday. They will be given to me over the phone, and I will tell her in person.


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## richie33 (Jul 20, 2012)

I have no advice for you but this must be terribly hard for you and your wife. I am sorry this has happened to your family.


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## johnnycomelately (Oct 30, 2010)

richie33 said:


> I have no advice for you but this must be terribly hard for you and your wife. I am sorry this has happened to your family.


Thanks for the message, but to be clear we have not had the definitive diagnosis yet. We are waiting for that call. She has been screened and given a 1:27 chance as of now.


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## EnjoliWoman (Jul 2, 2012)

I realize there are those who have very little negative feelings an experiences with Downs. And although my sister's handicap is different, it changes parents' lives forever. I would make the same choice. My parents have never been on a vacation alone together. My sister will ALWAYS live with them. These golden years of the empty nest do not exist for them. It could be some Downs kids go on to leave home and live pretty normal lives. And then there is the other end of the spectrum.

I would just ask your wife to be honest with you as to what she needs. And what she thinks she needs could change. Right now it may be a clinical decision. Perhaps later she'll want to grieve but hasn't anticipated that. Some things in life you just have to take as they come and I think your wife's feelings will be very uncertain.

I hope your results are for a healthy, normal child and you can enjoy this bonus child.  If not, you will both heal and enjoy the two you have now.


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## Jamison (Feb 10, 2011)

Holland said:


> At the stage she is at I'm sorry to say but it would most likely be that she is induced and will go through a live birth.


I had a family member who went through this. She was 18 weeks, they couldn't find a heartbeat, come to find out the baby had died. They induced labor and she birthed the baby. One of the hardest things was, they named the baby and then had a burial/funeral for her. Little baby girl.


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## EnjoliWoman (Jul 2, 2012)

A funeral for an 18-week fetus? To each their own.


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## Jamison (Feb 10, 2011)

EnjoliWoman said:


> A funeral for an 18-week fetus? To each their own.


Yep, thats right to each their own. Just like Johnny has a choice to keep or abort. My family memeber didn't have that choice, but they did on how to deal with the loss, and the funeral was part of it.


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## AgentD (Dec 27, 2010)

Jamison said:


> Yep, thats right to each their own. Just like Johnny has a choice to keep or abort. My family memeber didn't have that choice, but they did on how to deal with the loss, and the funeral was part of it.


Its quite common. My husband has a baby brother, who was still born delivered at 20 weeks, and they did the same thing for him. 

Johnny, here is a ray of hope, there are many women in their 40's who have babies who do not have DS. I know you all feel its slim chance, but there is still a possibility DS isn't present.


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## johnnycomelately (Oct 30, 2010)

EnjoliWoman said:


> A funeral for an 18-week fetus? To each their own.


I understand it is quite common to keep pictures etc. I doubt this is the route my wife will want to take, but if it makes it easier for her I will go along with it.


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## Homemaker_Numero_Uno (Jan 18, 2011)

johnnycomelately said:


> I understand it is quite common to keep pictures etc. I doubt this is the route my wife will want to take, but if it makes it easier for her I will go along with it.


I had medical photos. From the lab. Not like the angel photos you see now that are so common for stillbirths and other early deliveries. 

Like I said, I kept them until I didn't need them, and then I shredded them. They were helpful to look back on so that I could see what was what. Because the time you have to spend with the fetus after delivery is somewhat short. Medical suites being what they are, the day (or night) needs to move on for the staff.

So be prepared for that too. The "next!" thing.


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## johnnycomelately (Oct 30, 2010)

The Down's test came back negative. The results for Edward's and Patau aren't ready yet, but they are both much less likely than Down's.


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## Lyris (Mar 29, 2012)

Oh, how wonderful! Here's hoping for the same news for the other tests.


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## richie33 (Jul 20, 2012)

Happy for you and your wife.
_Posted via Mobile Device_


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## 827Aug (Apr 27, 2008)

Wonderful news!


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## Coffee Amore (Dec 15, 2011)

That's great news!


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## AgentD (Dec 27, 2010)

Glad to hear!


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## Maricha75 (May 8, 2012)

Awesome, Johnny! Here's hoping the others come back negative as well!


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## johnnycomelately (Oct 30, 2010)

Thanks for the comments. Celebrating with champagne, and orange juice for the missus.


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## Sanity (Mar 7, 2011)

johnnycomelately said:


> The Down's test came back negative. The results for Edward's and Patau aren't ready yet, but they are both much less likely than Down's.


As somebody who values life and inherently pro-life, i'm very happy that this will prevent an abortion. Having said this please consider getting a vasectomy to eliminate the chances of putting another baby at risk for termination. Thank you, good luck and congratulations on the lastest addition to your family.


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## alte Dame (Aug 7, 2012)

Wonderful news . Wishing you both the best.


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