Decision Time…

24 Jun

I got the call at work while I was on the phone with a client. I actually had to hang up with the client (someone I had been trying to get a hold of for MONTHS!) because I was getting some of the worse news in my life – to date.

My doctor, who is incredibly blunt, starting out by telling me that the results of the test that I had taken had come back positive. It took me a few seconds to figure out what test she was even talking about. Even once I realized what she was saying I didn’t panic at first. I figured that it had either come back positive for spina bifida (which we had already seen on the ultrasound was unlikely) or some other thing but with a really high ratio.

I asked what it had come back positive for.

She said Downs Syndrome.

I am surprised.

She explains that we really need to schedule an amnio to find out for sure because some babies with Downs are very sick, particularly if they are female.

I tell her that we are having a boy and that I don’t think I want an amnio.

She says that we really need the amnio so that we can begin to get an idea of what this child is going to need at birth etc.

I ask what the odds are that this baby has Downs anyway (fully expecting to hear 1 in 250 or MAYBE 1 in 100). I am only 28 after all!

When I hear 1 in 24 my stomach drops out.

Oh. God.

This is actually a possibility.

In shocking I agree to schedule the amnio, thinking at the time that I will probably do it but also knowing that I will have time in the meantime to make up my mind.

I hang up, shut my office door, call my husband and burst into tears. I am unable to stop crying for several hours, including sitting through a meeting at work.

Hubby stopped by my office to check on my and my friend who also works at my office also came in for awhile. I don’t remember much about any of it except sobbing my way through most of a box of kleenexand saying that I cannot believe that ALL of my children are going to be special needs!

That was yesterday.

Today I actually feel much better.

I have no idea what I am going to do about the amnio. I have an appointment to have one next Wednesday, but beforehand they are going ot do another level II ultrasound and another round of genetic counseling. I am sort of thinking that if they find any indicators for Downs on the ultrasound that I will likely not have the ultrasound – no point. If they find nothing on the ultrasound, I have a really tough decision to make. I asked if they would let me wait until after 24 weeks when the baby is viable, they said no but said that they wouldn’t tell me why over the phone (WTF?).

I just don’t know. I want to know now that I know it is a likelihood, but I wish I knew nothing at all.

I really wish I hadn’t done the quad screen. I only did it to check for spina bifida, I never thought about what it would mean to me if I got a positive on any of the other tests.

Having a child with Downs Syndrome is far from being the end of the world to me.

Is it what I would want for my child? Of course not. But as far as disabilities go…if that’s the worst we get I’ll be very happy with that.

I have been working with Downs Syndrome children since I was 16 and I have always enjoyed them more than any of the other DD children I have worked with. There is just something about them…

This child will be a blessing either way.

I just wish I didn’t know so that I didn’t have to make a decision about risking his life over an amnio (a 1 in 200 chance of miscarriage…much lower than the risk that this child does have Downs…).

Of course I don’t want to put my child at risk when I wouldn’t terminate either way. But now I feel like I need to know so I can have some peace over the next four months and so I know whether or not I need to prepare my family and friends that my child may not be exactly what they are expecting.

::sigh::

What would you do?

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45 Responses to “Decision Time…”

  1. Michell June 24, 2009 at 9:20 pm #

    That’s a really difficult decision. And each person has their own beliefs and reasons that factor into the decision. Me I know I’m big on having all possible available info in advance which gives me a chance to process it all and prepare. If you decide however that the risk for loss is just too great that’s ok too. You have to do what works for you and your family. I’m hoping that things are ok for all of you. Hugs to you.

  2. Artblog June 25, 2009 at 1:04 am #

    If you’re not going to terminate, don’t bother. I don’t see why you would. If they’re telling you to have one because they want to see how bad the downs syndrome is and you’re still adamant you wont terminate, tell them that and again, why bother with the amnio.

    The only information they can get with an amnio is the karyotype details which will basically tell you what sort of trisomy he has. They need to verify this so they can convince you to terminate.

    It seems like you’ve made the decision to keep your son either way, as you say, you have experience and that’s your choice but they will try to convince you to terminate, be aware of that, its their job.

    If you’re keeping the baby whatever they say, an amnio is just a waste of money for you, its stressful and can be painful. Why put yourself through that.

    I can only wish you lots of luck and courage when he’s born and hope he brings you some joy amidst the hard work that it will inevitably be.

  3. seussgirl June 25, 2009 at 2:38 am #

    Oh, hon – what a hard decision to make! We opted out of all testing, knowing we wouldn’t terminate. But with that sort of ratio, I don’t know if I’d want more testing. I’d probably research the possibilities. It is really odd that they’re pushing so hard for the test – is there another doctor you could question about that?
    Thinking of you!

  4. Orodemniades June 25, 2009 at 3:51 am #

    Hey, waittaminutehere, why aren’t they doing the 3D ultrasound first? We didn’t do the quad screen (expensive and we’d have had to travel to…Harvard? Wesleyan?…?) because we’d decided to have the baby no matter what. But we did do the 3D/level 2 ultrasound as my OB wanted to make sure that there were no heart issues, as that is common in babies with DS. And, since you’re 19 weeks, and a US is non-invasive…? Obviously not a guarantee, but surely that could be an indicator of DS?

    I’m with Suessgirl, too – why push so hard for amnio at this stage?

    On the other hand, thinking practically, you do have your hands full with Lennon’s upcoming surgery.

    On hand #3, for me, practicality is out the window. Life happens. I think I’d push for the US first and foremost. I’m not sure I’d do amnio at 20w…I think I’d wait until there was a better chance at viability should the worst happen.

  5. Amy June 25, 2009 at 4:53 am #

    Oh honey…..I’m so sorry you are going through this right now. What a tough decsion you have to make. I don’t know much about the testing, but agree with trying to get a 3D ultrasound. Lots of huge your way. Xoxo

  6. twondra June 25, 2009 at 5:03 am #

    Wow. I don’t think anyone could go through as much as you’ve gone through. I’m so sorry sweetie. I’m thinking and praying for you. Love you.

  7. Ms. J June 25, 2009 at 5:38 am #

    LaLa . . . oh baby, you really are having the world’s worst set of circumstances coalescing [sp?] into one giant shitstorm.

    Okay, having never gotten that far along in a pregnancy I am non-equipped to give advice about which test to have or not have.

    But I am wondering if you could find a web site or local support group aimed at families of children with Down’s, and get some advice or perspective from them? I know that these groups EXIST, especially providing support for parents newly confronting this type of altered path (though yours is a 4.16% chance, if math is correct, which sounds a lot better than saying “1 in 24.”). If you need help in finding such a group, tell me, and I will do the research/googl.ing for you.

    I want to take the opportunity to tell you how in awe I am of your unwavering love and commitment to your baby boy’s life. I knew you would not terminate, no matter what, but I still want to tell you how wonderful it is to know somebody with that kind of grit.

    One day at a time. One minute at a time, if need be.

    XOXO

  8. Io June 25, 2009 at 5:43 am #

    I wish I had a crystal ball and I could tell you the right thing for you to do…
    Did you make clear that no matter whether or not the baby has Down’s you are keeping it? They may be pushing for it because they expect you’d want to terminate if he does have Downs and want it to be earlier rather than later.

  9. a June 25, 2009 at 5:43 am #

    They usually do this amnio around 20 weeks probably partly for practicality (in case parents choose to terminate), and to prepare. A level II ultrasound can show indications, but it is not conclusive, so the proactive doctor will probably push for amnio. It’s totally your choice, though. I agree with Ms. J – a 4% chance sounds so much less threatening than 1 in 24. Which means that there’s a 96% chance that your baby does not have DS.

    I wish you luck with your decision and your pregnancy.

  10. Ms. J June 25, 2009 at 6:48 am #

    Io raises a VERY good point – make sure they know that you will be KEEPING this baby, with much love and joy, so they get off your back.

    One more thing . . . you might want to think carefully about who you share this news with (potential or real, if it turns out that way) — you will receive a LOT of ignorant remarks, people questioning your judgement, and horror stories. THAT is the very reason why we chose to tell only 5 people that our Lil Pumpkin had a heart condition (which would require open heart surgery) prior to adopting her. Even then, we waited months before telling 95% of our friends and family (my own dad and stepmother were kept in the dark), so that they would fall in love with our Lil Pumpkin, and not hold her and their hearts at arms’ length.

    You might want to think about this, too. I don’t want your already overburdened mind to be further junked up by people who should be keeping their damn traps shut!

    Wuv you.

  11. MFA Mama June 25, 2009 at 7:06 am #

    Having read your thoughts and feelings on the matter, I think it probably boils down to whether or not the amnio has anything to offer your child in terms of improved care at birth. You don’t want to risk miscarriage, and while low the risk IS there and I get the sense you would totally blame yourself if you were that 1 in 200 (realistically SOMEone has to come out on the crap side of those odds and like mine your family seems to do a lot of that). I think the reason they wouldn’t talk about doing the amnio AFTER viability is that they want to keep termination on the table as an option for you. Which given that the majority of people who find out their child will have DS at this stage of the game do choose termination I guess that’s good patient care for the majority of people, but…they know how you feel about this, yes?
    I think if I were you I would insist on talking to a neonatologist and asking them about this from the standpoint of potential impact on the baby’s care. In other words, do they get reports from obstetricians about amnio results for DS babies that change the drugs/instruments they bring to their births or the labs/procedures they do in the first few minutes of life in a way that results in better outcomes for those babies? Or do they come to every birth prepared for anything and assess each baby as an individual, then proceed accordingly?
    As the mother of three children with a genetic condition (although we didn’t know until after the third was born that they all had it to varying degrees and an amnio MIGHT have predicted they were affected if we’d known what we were looking for, but would NOT have told us the severity, which varies greatly from child to child), I WILL say that the amnio doesn’t make a ton of sense to me from a standpoint of “how can we best help this baby have the best possible outcome?” Some babies with DS are very healthy at birth and others are very sick, but I don’t think amnios can predict the severity or type of issues the baby will have. That’s something sonography would be MUCH more valuable in forecasting, since ultrasounds can tell you things about the anatomy of the baby’s heart and bowel, and the issues that make DS babies sick at birth are structural. Now, if they’re worried that this might be some OTHER trisomy, one not compatible with life, then the amnio might make sense in terms of planning whether to use heroic measures or perhaps consider comfort care only. I think if that were the case you would see more abnormalities on ultrasound though, and abnormal growth/IUGR.
    I am not, by the way, discounting the idea that an amnio is an entirely legitimate thing to do if you *need* to know for your own peace of mind. If it will help you plan, or if there is the potential (as there certainly seems to be) that this is a false-positive and a yes/no answer could allow you to have some peace you might not otherwise have throughout the rest of your pregnancy, I think that’s valid too. You know yourself better than any of us innernets do, and are the only one who can say what you can and can’t live with for the next four months in terms of uncertainty. Personally, I hate question marks when it comes to my kids–it drives me crazy! There *are* some tests (by which I mean painful, invasive tests) I have declined on their behalf though, with their doctors’ blessing, because they fall under the category of “information for information’s sake” and the results would not change my childrens’ clinical management or quality of life.
    I just found your blog, oddly enough, by searching for blogs about kidney transplants (the love of my life has a kidney and pancreas transplant), and have been reading through your archives with interest. Whatever decision you make will no doubt be the right one for you and your family; your love for them is on every page of your blog and I have faith in your ability to choose what will work best for you. Good luck!

  12. S June 25, 2009 at 7:08 am #

    I’m so sorry…it is such a tough decision. For us personally, we had to do the amnio. Our situation was a little different. Normal pregnancy, 3 m/c, RE, pregnant, 18 wks u/s with peri, cysts on her brain, not a clear picture of her feet, heart looks fine, b/w looks fine for my age, 35 at delivery, possible Trisomy 18. I thought about it for a week and then scheduled the amnio. We opted for the quick results for T-21,18,13 and x and y chromo. The full amnio took about 10 days to return. We were lucky and blessed with a healthy baby.

    I was very nervous about the m/c risks with amnio. I barely moved the day of the procedure and two days after (per my peri). I was nervous about the whole procedure.

    If you do choose amnio, please know that the procedure is not terrible.

    You will make the right decision. Hugs……

  13. Sweet Georgia June 25, 2009 at 7:52 am #

    I’m not even qualified to have an opinion on this. My thoughts are with you, whichever way you decide.

  14. Aunt Becky June 25, 2009 at 8:25 am #

    Okay, so, what would *I* do? I’d wait for the ultrasound at 18-20 weeks and see if there are any soft markers for Down’s. If you’re not going to terminate and you want to get an amnio, they can do one closer to your due date.

    It’s an impossible situation, love, and please, let me know if you want to talk. Been thinking of you all and crying.

    Love to you all.

  15. Michelle June 25, 2009 at 9:21 am #

    That is so tough. If it were me in your shoes, I wouldn’t do it. You have had the worst luck the past couple years. I totally understand wanting to know what you’re up against, but is it worth it to risk losing this baby? Especially where you already have experience with down syndrome children. If it were me, I would just plan on it being very likely and then face the potential of being very pleasantly surprised at birth.

    I am so sorry honey. My heart just aches for you. I wish there was something I could do, something I could say. Just please know that you are never far from my thoughts and prayers.

    *BIG hugs*

  16. Leah June 25, 2009 at 12:40 pm #

    I have never experience that so I can’t really say. I never did the quad test with my pregnancies. I don’t think me personally I would do the amnio, to much risk and you are going to love the baby as is. Just my personal opinion of course, I will pray for you.

  17. annacyclopedia June 25, 2009 at 1:03 pm #

    I don’t have much useful to add beyond what everyone else has said – waiting until viability before doing the amnio, etc. But I imagine that if I was in your shoes (meaning exactly your shoes with ALL you have going on in your life, not just facing a possible Downs diagnosis) I would want to know. I’m not saying that’s what you should do, just saying that I think that would bring me the most peace in the midst of it all.

    You are absolutely right about this child being a blessing either way. I hope my comment yesterday didn’t make it sound like I didn’t feel that way, too – cause I do, totally. I just wish something would start going completely, 100% smoothly and as expected for you.

    Oh, did I say “something”? Cause I meant EVERYTHING!!!

    Big hugs to you.

  18. Two Makes Four June 25, 2009 at 6:28 pm #

    I really don’t feel like I could give advice or even say what I would do. I would have to be in the situation and follow my gut. So I guess that’s what I’d advise? Anyway, I’m just doing a raindance for things to look up for you. You are hella strong.

  19. noswimmers June 25, 2009 at 7:19 pm #

    Oh sweetie…I am so sorry for all of this shit. You don’t need any of this.

    I don’t know anything about the science behind any of it, nor the risks of the amnio, etc…but I do know that you should do what feels right to YOU and your family, which doesn’t always coincide with what the doctors tell you. In the end, you are the one that has to live with the decision every day, whatever that may be. Whatever you decide, it will be the right one for you.

    I don’t pray, but I am going to say a special prayer for you and your family tonight. I feel so helpless. If there is ANYTHING I can do, please let me know. Really.

    Sending hugs and strength and love to you and your family.

    xoxo

  20. Sheri Rouse June 25, 2009 at 8:26 pm #

    I came over from Mandy’s blog. I am so glad I did because I too had a positive test for Downs with my daughter (oddly enough she has spinal biffida occulta and that didn’t show)

    I freaked out about an amnio. I asked what the point was and they told me we needed to know in order to have specialists at the birth in case of issues. We prayed and prayed that the amnio would not have an adverse affects. I went in that morning and I swear to goodness the doctor and the tech were unable to pierce my uterus. They poked my belly 7 times, I still have the scars. We joke that we prayed so hard that we made it steel. I went to a specialist and while I was telling him the story he did it in like 10 seconds and Iwas shocked!

    They did their thing and “grew” the DNA, which I got find out that she was a she, and all was good. The specialist told me that they get false positives all the time and the odds are quite great that everything is fine. I was 33 at the time of the pregnancy.

    try to find some peace and do what is best for you. Lots of love.

    Sheri

  21. Sheri Rouse June 25, 2009 at 8:29 pm #

    Holy crap. I just found out by reading around that you have a Lennon. Beatles fan?

    We have a son named Harrison and a daughter needed McCartney. 🙂

    There is another family in our city that has a Lennon and McCartney.

  22. Celia June 25, 2009 at 8:47 pm #

    Hmm, since you asked what i would do in your place, I think I would see if there was a non-invasive way to make sure the baby was physically safe. If there is nothing that looks alarming I would hold off.

    If the babies heart and other organs seemed fine, I would just let it go. I have to agree with you, that there is something so special about a child with Downs. We have a close family friend whose daughter has Down Syndrome. She is in her late 40’s now.

    Maybe you would want to consider switching hospitals to one that might be best suited to take care of a child with potential health problems.

    If you have never read the book Road Map to Holland, it was wonderful. The woman who wrote it had twin boys, one with Down Syndrome and one without. It might be too hard for you right now, but keep it in mind for later maybe.

  23. JessPond June 25, 2009 at 8:47 pm #

    Here from No Swimmers’ blog….I’m sorry about your situation and will pray for you that you get some peace, no matter what you decide.

    I know you don’t know me, but I think if it were me I’d try to get them to do the 3d u/s too….and probably not do the amnio. The amnio carries too great a risk for me…and if you’d not terminate anyway, any risk is really too big a risk. Ask for REPEATED u/s’s even, esp if something comes up questionable.

    Good luck to you. You won’t have more than you can handle, I feel certain just from what I’ve read.

  24. Emily June 25, 2009 at 8:59 pm #

    I don’t have answers for you, because I’m not in your heart or your head. Only you can make this decision, and I wish you strength.

  25. Kristin (kekis) June 25, 2009 at 9:20 pm #

    I’m here via noswimmers to let you know that you’re in my thoughts and prayers. I haven’t carried a pregnancy long enough to be in your shoes, but I know you’ll make the right decision for YOU. The only advice I can give you is to take a couple of days to cry, scream, worry & breathe. Get through that, then start looking for the best decision for you, your baby & your family.

    As the older sister of a severely handicapped brother, I can tell you that he is the light of my life and my hero. While I wouldn’t wish his disabilities on my children (and I don’t know what I’d do if faced with it), I can tell you that my brother is a blessing to my family and me. I’m sure you’re wondering why God is letting you have yet another of his special needs angels, and I’m sure you’re scared, worried, concerned, hopeful, and terrified. Take some time and go from there. Sounds like you have friends & loved ones to help you along the way.

  26. Nicole June 25, 2009 at 9:40 pm #

    I’m so sorry to hear about this news. I had a similar outcome with my second child (although, one in a hundred, not 1:24). I thought it would be a good thing to do since the test outcome gave us peace on mind with our first child. You don’t think the outcome could set you on a path of uncertainty for the remaining four months of your pregnancy.

    We decided not to do anymore testing. I thought about it this way… if there were 100 women (24 for you) in the room all with the same result, then only one child would be born with Downs to those 100 women. I decided that I could live with that risk and, since I would not choose to abort my child even if the result was positive, it just wasn’t worth the risk.

    And you know what happened? I managed to make it through the rest of my pregnancy without thinking about it every day. Sure, it was in the back of my mind, but I enjoyed being pregnant, I looked forward to the birth of my baby and life went on. I was lucky and he came out without any signs of Downs, but even if he had been born with Downs I can’t imagine myself being less happy about his arrival.

    And my doctor did not suggest at any time that I should do amnio. He said it was completely my choice and never once mentioned the need to find out if there were serious health problems while he was in the womb,

    Apologies for the rambling. I just wanted to share my experience so that you have another perspective. In the end, though, the choice is yours and you should do whatever will set you heart most at peace and allow you to enjoy the miraculous child that is growing inside you.

  27. futurewise June 25, 2009 at 10:45 pm #

    Sweetie, I don’t know what to say… I agree with your choice and understand your fear and hesitation concerning amnio. My thoughts and prayers are with you and your baby…

  28. Keri June 25, 2009 at 11:26 pm #

    I can only speak for what I would do, and it is coloured by having an aunt and uncle with Downs Syndrome, and knowing that it isn’t just about whether you would terminate (You’ve clearly made up your mind on that one), but what to expect at birth and beyond – whether to have certain specialists on hand (For instance, cardio), whether to arrange for certain programs straight away or early in piece – those kinds of things.

    Also, just so you know (Because the question has come up recently in my family) the risk rate for miscarriage with amnio is down to .6% according to a recent study. I’m sorry I don’t have the study to hand, but I’m sure you’d be able to find it if you wanted to. You might not if you decide not to persue an amnio, but I certainly understand the doctor urging one – they like to have a plan going forward, and don’t always think from the perspective of a protective mother wanting to keep their baby from harm.

    No matter what you choose, and what the outcome is, I know the utter joy I get from being with my aunt and uncle, and even though the road is harder with them – and for their parents – the joy outweighs it.

    My thoughts and prayers are with you.

  29. Emma June 25, 2009 at 11:47 pm #

    Hi. I just popped on by from another blog and want to say that you are not alone. I live in Scotland and here they do the blood test routinely… I had my test (aged 29) two weeks ago and on Monday a “specialist midwife counselor” called to discuss my results. I hadn’t been at all concerned but she told me my risk for Downs was 1 in 30. My gut instinct is to have the amnio, for my own peace of mind, which feels really selfish and guilty… I will keep my baby whom I love either way… but after much soulsearching with my husband we’ve decided to have the scan first and if there are any “markers”, we wont have the amnio… in my mind there’s no point, it’ll be confirmation enough. And tbh, I don’t think I will have the amnio if the scan comes back fine. My concern isn’t having a Downs child, but having a Downs child who is born with other medical complications that we are unprepared for, but hopefully the scan will pick up on that. I just know that I probably will worry in the backof my mind, and instead of gazing joyfully at my newborn I will be searching for “signs”. I don’t mean to infer in any way what I think you should do, but I just wanted to let you know that somewhere on the other side of the world someone was as shocked and confused as you are and I will be praying for your family as I pray for mine

  30. Angie June 26, 2009 at 12:56 am #

    I just wanted to offer up my condolences. What a tough decision you have to make. No one can really tell you what to do here….

    I have 3 children and my husband and I agreed with the very first one that we would not do any genetic screens. I was not willing to take any chances with an amnio and we knew we would never abort anyway, so what was the point of knowing?

    Now, since you have already had the screening done and the odds aren’t looking too good, what to do? In my humble opinion, I dispute the doctors sense of urgency…. You can give birth w/o knowing one way or the other.. . They just need to go ahead and prepare for the worst case scenario. Why jeopardize your child’s life for an answer?
    Personally, I wouldn’t let the doctor talk you into anything.
    If YOU feel that you need these next few months to prepare yourself and you can cope with the risks of the amnio, go for it.

    If I were in your shoes, I seriously don’t know what I’d do it. Not knowing would kill me, but I couldn’t stomach the risk to my child either. God forbid that the worst happened, I’d never be able to live with myself. So I don’t think that would be an option for me either. I’d just have to let it be in God’s hands.

  31. Holly June 26, 2009 at 3:41 am #

    I’m so sorry. This is so unfortunate and I can only imagine what you are going through. I completely understand not wanting to go through with the amnio, but I also would want to be as prepared as possible. Maybe make your final decision after the next level II u/s…but just know that I wish the best for you and am thinking about your family.

  32. foxcherubs June 26, 2009 at 5:02 am #

    if you know you’re going to keep your little boy, and you’re worried about the risks of amnio, then go with your gut and don’t proceed. I work at a peds office and many kids that were dx as being DS are highly functional and some don’t even really have that “classic” appearance either. You are being blessed with this little boy, and he will bless you more than you could ever imagine =)

  33. Courtney June 26, 2009 at 5:11 am #

    I went to the OB last week and got a pamphlet about the quad screen from the American College of Obstetricians and Gynecologists and it says the following:
    “Only about 1-2% of patients whose Multiple Marker Screening (the Quad Screening) show an increased risk for Down syndrome will have a baby with Down syndrome.”

    I don’t know how that translates since the screening supposedly gives you your chances (ie 1 of 24) of having a baby with the abnormality.

    Read up and ask for details at the genetic counselor.

  34. Marie June 26, 2009 at 5:42 am #

    I think that given the little bit of history I read, you are obviously supposed to have this child in your life. I hope that that gives you some peace. No matter what you decide for your family it will be the right decision so don’t second guess yourself.

  35. Anastasia June 26, 2009 at 5:46 am #

    I have a friend who received the same news you did, except her baby was a girl. Because there was some risk involved with the amnio, she opted to have the ultrasound. They found the heart defect associated with downs syndrome, which left them with all but the tiniest chance she didn’t have it. After that, they opted not to do any more testing. They knew she most likely had downs syndrome and they knew certainly that she would need heart surgery shortly after birth. the moment she was born and they looked at her, that was when they knew for sure that she had it. But you know, that mattered less than that they had a beautiful baby girl.

    I was really moved when my friend told me all of this about her daughter (who is a delight, by the way). I’ve always thought that if I were faced with the same issue, I would aim for the same. There is no way I would terminate, so I would be content with the ultrasound, and with knowing there was a high probability. Knowing for sure wouldn’t affect the outcome for me, so I would refuse the amnio. A fully equipped hospital should be aware of the possibilities for a baby with downs syndrome and really ought to be able to handle whatever comes up, regardless of what you’re doctor is saying.

    best of luck. I’m new to your blog, but I thought I would leave a note about my friend’s experience. I’m glad to hear you say it isn’t the end of the world, because I would agree…as far as disability goes, this isn’t the end of the world. And yet, I am very sorry to hear it. It isn’t what any mother wants for her child. It’s absolutely life-altering news, for your entire family.

  36. Jen June 26, 2009 at 5:55 am #

    I’m so sorry. I will hang on to the hope (and good odds) that you will get one of the 23 out of 24 that doesn’t have Downs.

  37. ninefirefly June 26, 2009 at 6:24 am #

    We opted out of the testing. But to be honest if I had done it and gotten the results that you did I would have to do the amnio. I just wouldn’t be able to not know for sure. I wish you peace in whatever decision you make.

  38. Adeshola June 26, 2009 at 9:10 am #

    Sweetheart, there is also a possiblity that your baby won’t have down syndrome. They told my best friend some of that news. If you know that you will love your baby anyway. Stay prayerful and leave the tests alone.

  39. PJ June 26, 2009 at 9:47 am #

    We went through the exact same thing. Our odds were
    1 in 33 and we elected not to have the amnio. After a
    miscarriage and many fertility treatments we knew we would not terminate. Our perinatologist tried and tried
    to get us to have the amnio saying were would be sorry
    in a few years when we had a disabled baby on our hands and that at least we would know what to expect if we went through with the amnio. We went for the appointment and the baby was breech , his head was in the way and there was no place for the needle to go in. We took that as a sign that we did not need the test , beat it out of that office and never looked back.
    I also work with people with DS and cannot imagine that
    someone could terminate because of it. There are many
    soft markers for DS as I am sure you already know. Our
    baby only had one, a questionable Nuchal translucency.
    Our hospital has a nationally ranked NICU and we met
    with the pediatric cardiologist just in case we needed him
    and he assured he would come right away if needed.
    On Sept.23 2008 we had a perfectly normal baby boy.
    I will not try to tell you that the waiting was easy because
    it was not but for us it was the right thing. I wish you all
    the luck in the world with your new son, you will be in our
    thoughts and prayers.

  40. kimberlyperez2003 June 26, 2009 at 10:48 am #

    Hi. I came over from another blog. If you know for sure that you are definately keeping him I don’t understand what information could not wait until viability to be obtained. I get what they are saying about being prepared for what complcations could arise but still, Maybe you could have a sit down with them where they can explain why they believe this can’t wait, cause me not being a Dr. and all, I just don’t understand. Bottom line is don’t let them push you into something you aren’t comfortable with. If you choose to wait to have they info, then they will have to wait as well. God bless you.

  41. k Nelson June 26, 2009 at 2:15 pm #

    Here is something that is so easy to forget when you are worried and scared… You employ your doctor. They have to do what you want (within reason). They can give you all the reasons in teh world they dont want to wait on the amnio, if you tell them you’d like an amnio at 20 weeks so you’ll have 10 weeks to prepare, then they should do it.

    If it were me (and this only me.. this is totally your decision). I would expect the worst and pray for the best. I would request sonograms every couple of weeks so that we could get a better idea of what might be… but nothing invasive.

    My heart goes out to you and I will definitely be praying.

  42. meinsideout June 26, 2009 at 3:36 pm #

    Here from noswimmers to just lend support.

  43. D. June 26, 2009 at 3:55 pm #

    I have no advice whatsoever, but wanted you to know that I’m thinking of you and hoping that the 23/24 chance that your baby is fully healthy is what prevails overall.

    And if not, then peace of mind and comfort as you come to terms with what lies ahead.
    -D.

  44. Cara June 26, 2009 at 4:26 pm #

    Go with your gut. You know so many things about this situation. You know you will not terminate, you know your love will not change for him,you know you will sacrifice what ever you need to meet his needs.

    An amnio and more info will not change that.

    xoxo

  45. Melissia June 28, 2009 at 11:11 am #

    I have to agree with Aunt Becky. If termination is not an option, then wait until your anatomy scan at 18 to 20 weeks and if you have any soft markers for Down’s then discuss an amnio with the doc. Her desire to do the procedure now is most likely based on her belief on termination if the results for Downs are positive.

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