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Trisomy 15

06/14/2012

Belle

Last Friday Dr. A’s office called to tell me the results of the karyotype – Trisomy 15. The report stated that three cells were grown in culture and that “abnormalities incompatible with life were found.”

Pip had a third 15th chromosome, which would have resulted in his or her demise no matter what I did. I did not kill my baby. I did not poop so hard I stopped my child’s heart. My immune system did not wage war on Pip. Pip was broken when he or she started out in the petri dish all the way back in February.

I feel so cheated. Pip was my best embryo; a perfect 5AA embryo. How could such a perfect embryo be so broken? Will all my other embryos be broken? I have read of women who have miscarriage after miscarriage before they finally get their take home baby. I don’t know how these women do it. I’ve had one loss and am already considering throwing in the towel. My brief, seven-week pregnancy has left me crushed, devastated and empty.

I have found very little information on T15. I have learned that:

  • Trisomy 15 is extremely rare.
  • Babies with T15 do not survive.
  • T15 can be a random defect or a problem with either the mother or father’s genes.
  • There are two types of T15: complete trisomy and mosaic trisomy. Pip’s report did not specify what kind of trisomy he or she had. I’m assuming it is hard to determine if only 3 cells were examined.

In a few weeks or months, whenever my cycle returns, I will see Dr. A and ask for more information. I need to know if we should test ourselves. I need to know if we should have our embryos tested before they are transferred. I need to know what the probability is that this will happen again.  I need some reassurance that we still have a decent chance to have a child.

In the meantime, I would love to find someone who has had a loss due to T15. I need more information and feel the best way to find this information is through someone who has been here before. If any of you all know of someone with a T15 loss who would want to talk to me, please put us in touch!

I actually have some good news but am going to wait a few more days before I share. It has been so long since we have had good news that I feel I should wait before announcing, just to make sure it will stick. And no, it is not another pregnancy announcement. We all know that if I were pregnant you would be bombarded by photos of pee sticks. 🙂

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28 Comments

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  1. D #
    June 14, 2012

    I am glad that you now have some sort of an answer as to what happened. Learning that my last failed pregnancy was a chromosomal abnormality helped me to know it wasn’t my body per se, but it also left me wondering what caused the abnormality in the first place. I totally get how you are confused about the perfect embryo having a chromosomal problem. It is just so hard to fathom how/why that happens. I’ll let you know if I hear of someone with a fetal trisomy 15 diagnosis. Glad you have some good news to share soon. You deserve it! 🙂

  2. June 14, 2012

    So, this does leave you with a lot of questions, but also it leaves a lot of HOPE. Trisomys are often random, and having an embryo with trisomy once does not mean it will happen again. Your body isn’t to blame. You are not to blame. You and your body did everything right, but were so, so unlucky. This isn’t your fault!

    I am very interested to see what your doctor has to say about how to move forward. Also, have you talked to him about how difficult the FET protocol was for you? Maybe there are some things he can adjust for next time to make things easier.

    Belle – this means you can get pregnant and support a pregnancy! I know you are still grieving, and that this doesn’t make your loss any less, but still, this is very good news.

    Also, I am so curious about your other good news…I can’t wait for an update!

  3. Jay #
    June 14, 2012

    Well, a genetic abnormality, was, sadly, the best possible outcome under the circumstances. My first loss was a chromosomally normal boy, to this day, I’m haunted by the question of what went wrong there. My second loss was Turners syndrome (45 XO)- which, 80 % of the time, is considered to be an sperm error, because its an monosomy, not a trisomy. The reasoning is, in a natural conception, a sperm with one chromosome missing may swim faster and get to the egg before any others. Trisomies on the other hand, are more likely to be egg errors.

    You do need to get karyotyped though, both you and your husband. BUT– the chances are high that it was a random event. To avoid something like this from happening again, IVF with PGD can go a long way. Its my backup plan anyway.

    If your embies are already frozen, I don’t think PGD can be performed 😦 But, a repeat IVF would be your best bet. These are tough places to be in, I’m so sorry 😦

  4. June 14, 2012

    I chose to believe that my miscarriage was a total fluke and not something that could be changed or would happen again. I chose not to have any testing done as I did my miscarriage at home and I chose not to have myself tested for RPL genetic anomalies as 1 miscarriage doesn’t mean anything. So I have absolutely no idea what happened in my situation, I do not know if the baby had a genetic mutation incompatible with life, but honestly that’s the best case scenario and what I choose to believe happened. Something completely random, not my fault, not my husband’s fault and not something that is likely to happen again.

    If I was in your situation I would take my 1 miscarriage and write it off as exactly what it is, a random gene mutation and move onwards and upwards.

    If it happens a 2nd time I would definitely delve into the matter further and have all of the embryos tested, myself tested, my husband tested, etc etc.

    That being said I would definitely ask your dr. what he recommends, but I would move forward as though it was a 1 time deal and hope for the best.

  5. June 14, 2012

    I’m so glad that you were able to get specific information about what happened. I hope that this can help you move on and up. I know nothing about genetics but all of your questions seem really smart. Since it is so rare, I would get really excited about your frosties. Doctors don’t really know how to be the “best” embryo which means that FETS are often really successful. I hope that the frosties are healthy and the next one will be much easier for you!

  6. June 14, 2012

    Oh Belle, I am so glad you have an answer (ever if it brings more questions) and that you know your body did not kill your little Pip. I have heard that chromosomal abnormalities are quite random and most people go on to have normal healthy pregnancies after a chromosomal abnormality loss. I think you should move forward assuming it is rare and the rest will be fine. As Jessica said, I would not worry unless you went through the same thing again. (Of course when I say I would not worry I mean I would TRY not to worry, not worrying is impossible). Also, my embriologist told me that the very good versus the good embryos have the same implantation/baby rate and that the difference between them is really just for looks. I am sure your next best embryo will have just as good chances of sticking. xo.

  7. June 14, 2012

    I hope that this information helps in some way. And I hope in some way it brings you hope to hear that this is such a rare occurrence.
    I’m excited for your other good news. I don’t know what it is but I am glad you have something to celebrate!

  8. June 14, 2012

    PS – I would post on the baby center or what to expect message boards to see if you can find people who have been in the same situation, I am sure you will find some.

  9. Denise #
    June 14, 2012

    I had a trisomy 16 loss back in April at 13 weeks. I researched and found that it’s most commonly due to an aneuploid egg, more common in older women (I turned 37 the day after my D and E.) They told me that it was fairly rare that I got this far along with a trisomy 16- that it’s a common trisomy but they usually m/c by 6-8 weeks. Another piece of info about me- I have a son from IVF. During the procedure, my embryos ended up looking really bad and they didn’t really think any would work. They either arrested, or weren’t at the right stage, or were disorganized. Luckily for me- one of the ‘bad-looking’ embryos turned into my son who has no obvious problems. On the other hand- a number of women in my infertility support group had ‘perfect embryos’ that didn’t take. And one woman did PGD on 6 decent looking embryos and 5 were aneuploid (she had RPL). The take home from all this is: the inside and the outside of embryos don’t always match up as much as we’d hope. The 3 women who had perfect embryos that ‘didn’t take’ were successful in later FETs- some on the first FET, the others on the 2nd. One told me that her doctor said often the fresh cycle can be unsuccessful, possibly because all the meds are hard on the body, and then a subsequent FET, when there’s less going on in the body, will work… Good luck to you and best wishes.

  10. Mo #
    June 14, 2012

    I don’t know if this can be called good news, but I know it’s a comfort.
    See if you can go the karyotyping route, which will probably give you a little peace of mind.
    [hugs]

  11. veetamia #
    June 14, 2012

    Waiting to hear the good news 🙂
    And I am sorry about Pip and T15; having a loss is pretty hard…I’m barely getting back into my senses, and do have days where I wonder how to move fwd. But know that you’re cheered on by all of us!!

  12. June 14, 2012

    Hey belle, how good to have an answer of sorts. My friend ( who had a son from a FET ivf and her second son died at full term, and then had repeated miscarriages, a downs termination of another son at 13 weeks), later moved on to pre genetic diagnosis. Note she’s an extraordinary case, this is not your destiny. Out of 22 eggs for her, and 17 embryos, I think 7 were suitable quality for PGD. I am pretty sure from memory out of these only 2 were ok, a couple had a trisomy issue had downs and two had something else. The genetic errors were mostly responsible for early losses. I thought the pgd occurred post freezing, but i May be wrong. You’re welcome to get in touch with her via me if interested. On a happier note, she’s 19 weeks pregnant now.

    The fact is, doctors don’t know good embryos. They have selection criteria , but it’s guesswork. I think one miscarriage I’d consider having another attempt, but in the face of repeat miscarriage, based on her suffering I’d definitely go the PGD route. This pregnancy for her was so much less worrying approaching 12 weeks when she knew there were no genetic issues.

  13. June 14, 2012

    This must be a relief in a way – it was random, not your body, you did nothing wrong (certainly not poop too hard). I wish you MUCH better luck with your next FET, should you decide to go again.

  14. June 14, 2012

    Having not yet even been pregnant I’m not sure I’d have anything helpful to say, but I do want to say I’m thinking about you and am looking forward to your good news 🙂

  15. June 14, 2012

    I’m so glad you were able to get an answer for why this happened. It’s still a loss, and I know you’re still grieving, but it must make it a little easier to move forward, knowing there was nothing you did or didn’t do that could have changed the outcome. I hope you get some answers to your new questions and a plan for next time. Also, can’t wait to hear the good news.

  16. June 14, 2012

    I’m so happy you have some answers, Belle, and I’m glad that those answers don’t point to your body or anything you could concievably turn into blaming yourself (like pooping). I hope you find someone in a similar situation to talk with. And bring on the good news! We need to celebrate with you!

  17. June 14, 2012

    I hope this brought you some peace to not blame yourself and you get more info when you see your Dr. I hope the good news sticks! I can’t wait to hear!

  18. June 15, 2012

    I don’t have direct experience with trisomy issues, but wanted to stop by and say,
    a) you look fabulous,
    and
    b) don’t throw in the towel. Give yourself time to rest and grieve, but you’ll be amazed at how strong you really are

    x

  19. June 15, 2012

    To have an answer to why things went wrong is a huge relief, although it brings out many new questions and surely concerns of the likelihood it can happen again, or something similar. I’d say talk to your dr’s and hear them out. Get yourself tested if you feel the need to clarify things.

    I don’t know the difference between T15 and T18 but here’s someone who just contacted me since she went through the same as me, ugh, I really hate the term ‘incompatible with life’ – so sad. Anyway, here’s her blog but don’t know yet how specific she’s written about it.. http://befriendingmyovaries.wordpress.com/

    • June 18, 2012

      Thank you, friend! I’ll check this blog out this evening…

  20. June 15, 2012

    Wow, I don’t know if you share this sentiment or not, but even though you got bad news, I’m incredibly impressed and relieved that you got news at all! I am hopeful that this answer, as devastating as it must be, can help you find some closure. Your plans for testing and the questions you have for the docs sound great, and I hope you get some good news to come out of all this bad news.

  21. June 15, 2012

    Oh Belle. I’m so sorry. News like this, even when it brings answers, is hard. Very hard. I’m thinking of you and hoping that the upcoming appointment with Dr. A brings some comfort and reassurance for the future.

  22. Nicole #
    June 15, 2012

    newtime lurker here – i lost a baby in november due to trisomy 13. a bit less rare than trisomy 15, however still quite rare. an awful part of my story though is that i didn’t miscarry nor did baby’s heart stop beating on its own for whatever reason. however a cvs confirmed it was full trisomy 13 and that the baby’s lymphatic system was in dire straits. so we opted a termination for medical reasons. full trisomy 13 is likely a fluke. so we didn’t opt for add’l genetic testing. i believe they tested about 20-40 cells.
    however, if all 3 of the cells had trisomy 15, it’s also likely a fluke. not guaranteed, but generally likely.
    i found an immense amount of support and information over on babycenter.com message boards under the Trisomy13/18 board. I didn’t see if there is another Trisomy board, but I’m sure if you searched you will find others like you.

    I will say this – the GOOD part of this (if there is any good at all) is that your body CAN carry a baby. an egg can successfully implant and such. your body simply recognized this baby was not one that could be
    carried. if i were in your shoes, i probably wouldnt pre-genetic test the next embryo and go with the likelihood that it’s doubtful to be a translocation (inherited). I know when you are the 1% (i felt this way with our diagnosis) that statistics like 99% seem not good enough because i have BEEN the 1%. the only statistic i like is 100%..but well nothing in life at all is 100% certain…so some amount of faith is required.

  23. denise100709 #
    June 17, 2012

    I asked my husband why he, personally, told me to stop talking about my 13 week miscarriage after only 1 week of me grieving- and by extension, why many men might do this (knowing full well he can’t speak for all, and not all men are like this.)
    His reasons, in order of importance from most to last were:
    (1) while it might make ME feel better to talk it over, dissect it, discuss people like me, it made him feel like crap to know that I wanted something so badly and couldn’t have it.
    (2) there’s nothing that can be done to change the outcome and
    (3) he didn’t feel as connected to the pregnancy or fetus and figures most men would feel that way. It just wasn’t something that he thought about all the time, like us who can’t help it while being sick, being hopeful, being uncomfortable, and because we often share a pregnancy by talking with other women while men don’t.
    It was difficult to be told so soon to just ‘stop talking about it.’ it’s still hard to deal with, 8 weeks later…

  24. June 19, 2012

    I’m so glad you got some answers, even though it was not exactly great news. But this does mean that your body CAN do this. Pip sadly had a bad roll of the dice, but your body is capable of carrying a baby. In some way I wish I had answers about what happened to my bug. I don’t know how women who have multiple losses do it either…I’m still fixated on my one.

  25. Allyson #
    November 13, 2012

    Hi Belle,
    I am so sorry for your loss. Miscarriages are painful on so many levels…I sincerely hope you are/have taken good steps to keeping your heart, soul, mind and body healthy through all this.

    I experienced my first miscarriage September 28 of this year, I was 10 weeks along. It was devastating, to say the least. I have had incredible support from my husband and his two sons (my step-sons are aged 10 and 15), our family and friends…it really took me by surprise just how compassionate everyone was. Something that caught me off guard was that miscarriages are so common. Perhaps in all my enthusiasm at getting pregnant I neglected to recognize the implications of just how common it is. Having said that, now 6 or so weeks later, I have just come from my Doctor with the news that our baby we lost was a little boy and the pregnancy was non-viable because of Trisomy 15. I am reeling from this news and my heart has broken just a wee bit more. For whatever reason, before today it was easier to think that it was just an act of God, but to now know that there was some genetic abnormality kind of hurts my heart more than loosing the baby. I hope time will heal this hurt.

    I can’t help but be grateful for this experience; odd to say, really, but it’s true. As Trisha said above, I am SO grateful that my body CAN do this. I am 40 years old and have never been pregnant before. Without going into great detail, it’s taken me a long time to figure out what I wanted in my life (university, a few career changes, and now I’m a professional firefighter), then it took time to find a great guy, fall in love and get married and be in a place where I would entertain the idea of having a family of my own…(I am an only child of circumstance not of choice; I was supposed to be the first of many children for my parents, but my sister was born healthy/happy and died of SIDS, then a few years later my brother was born and also died of SIDE…my parents resigned themselves to just one child. I think I always grew up extremely afraid of facing that fate myself….but, I digress). So to come to this point in my life AND to get pregnant was a feat in and of itself.

    I don’t want to give up yet, though I am scared; scared it will happen again, scared it could be worse, scared for a million different reasons…but part of me just can’t bear the thought of NOT trying again. Do you feel the same?

    I hope this little blurb helps in some way…you’re not alone in your fears. I wish you all the very best in your “quest” and have fingers crossed for your happy news in the future!!!!

  26. Jennifer Kelly #
    August 6, 2013

    I found this entry while researching for an adoption situation I am helping with. I am so sorry about the loss of your son. I hope you have found peace and healing in this past year.

  27. October 28, 2013

    SO, I stumbled upon your blog doing a search for Trisopmy 15 miscarriage….I am now in the shoes that you once filled having lost my baby boy at 12 weeks. The difference is you have an amazing new baby girl post miscarriage and I have an amazing baby girl prior to the miscarriage. We did get our blood drawn today to see if one of us contributed to the abnormality. Did you guys check? What did you guys do moving forward? Did you do anything to help ease your mind during the next pregnancy? Like you, I was very relieved to know it was nothing that I or my body did to hurt my baby but now I’m worried about a future baby having the same issues…..I LOVE LOVE your blog. So happy to have stumbled upon it. As a side note, my dear friend just delivered via unplanned C-section today (breach) and I happend to read your post with the awesome Ass-vice and passed it on to her!

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