Has anyone had to terminate for chromosomal reasons?
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Anonymous
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I have gone through spontaneous miscarriages and then D&Cs...and (as you have said) the more horrible decision to have to terminate a T18 pregnancy that was a result of IVF and a long and hard battle with infertility.
The latter was way more challenging. Those sharing experiences regarding simple D&Cs for missed miscarriages are as unaware of the looming complications of 'termination' as I was. First, there is a problem with health care coverage for a termination. Check with your insurance company. My OB was so apologetic when she realized AFTER the fact that my insurance wouldn't cover the procedure. I think she 'ate' her fee. I don't think I was ever billed. I did have thousands of dollars in hospital fees to pay out of pocket. Second, there is a problem with terminating a pregnancy that has progressed too far. I was 'fortunate' (and that term is used very carelessly...as there is no fortunate aspect in this diagnosis) that the trisomy had greatly stunted the development of my little boy. So the pregnancy appeared to be at 10 weeks, vs. 13 weeks. In some cases you will have to go to a practitioner who will do terminations of more 'progressed' pregnancies. My OB was well aware of the developmental level of our baby, and was able to do the procedure...but the practice had referrals on hand, to send me off to (I think GW) another practitioner, if it exceeded their capabilities. Finally, make sure your 'team' of practitioners is completely on board and in line with your decision. I know that this was a 'fluke' event in my care...but my anesthesiologist was opposed to providing care to someone terminating a pregnancy. He told me just that as he informed me that he would not be providing me care that day. THE WORST part of my care...and a hospital error beyond error...but, just something that happened. Finally, get your whole team involved...My RE was calling me, so devastated by what happened...I knew that from all directions, I was being supported and counseled, and cared for in the best possible way. And because my RE was so involved, I could go back into THAT office, and be treated humanely and with a tremendous amount of compassion for what I had gone through. He was so up in arms about my insurance company refusing to pay, that HE was going to write letters and be aggressive in advocating for appropriate reimbursement for my care. We told him it was OK, and we would just do what we had to do. (we knew the futility of the efforts). Those are my experiences (reluctantly lived through)...with something so traumatic and terrible. But there was a rainbow...Now, I have two beautiful, genetically typical 3 year olds that are mine and my husband's everything...our sunshine... My wish for you-- is for you to be equally blessed with something so well deserved... |
Anonymous
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Hi everyone, this is the OP. I am so grateful for the information you've all shared both here and privately. It has been hugely helpful. Also, thank you for the words of compassion and understanding. You've made me cry as I read through them all. This is such a terribly painful and lonely process and you are offering more comfort than you can know.
Our official test results come back tomorrow morning, but given what we've already seen on the ultrasound, there is really no question what the outcome will be. I spent part of the day today making calls to the insurance company, my doctor's office at GW, and Potomac Family Planning, which a few of you recommended. It turns out that I really do need to have this done at a hospital since I have a bicornuate uterus; my OB wants me to do it where they can be guided by a simultaneous ultrasound, and not every facility can do that. Thankfully, we are very fortunate in that my company's health insurance will cover 100% of the procedure at GW, except for a modest copay. So that's where we'll go. Added bonus: no chance of protesters outside, which I'm not sure I could take. I am dreading the days to come, but I know that this decision, excruciating as it is, is the right one for this much-loved and much-wanted baby. To the PP who reminded me that this is what a strong and loving mama does for her child -- thank you. Those words in particular have helped to keep me grounded. |
Anonymous
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I am so sorry, OP. I had a termination at 18 weeks at GW with Dr. Larsen. Not chromosomal but a not compatible with life physical defect. The emotional process was horrible but the actual procedure and physical recovery was as smooth as it could be. Thoughts and prayers for you and your family. I too could not bring myself to permit my baby to suffer, as he would have in the womb as soon as he could feel pain until he died, either in utero or within minutes of birth.
I have a healthy 2 year old and am pregnant again. I know it won't help you now but there is life after this kind of loss. |
Anonymous
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My prayers to you, OP. I had a m/c at 10 weeks due to a fatal trisomy. This was after a long time trying to get pg. But I had the m/c and then later learned it was a fatal trisomy.
One day I just went in for a routine u/s and they told me the heart stopped beating. Be good to yourself during this time. Give yourself time to heal. |
Anonymous
| I just wanted to say I'm sorry OP. I wish you peace and healing. |
Anonymous
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OP again. Of course nothing is ever straightforward with this pregnancy.
Our preliminary results came back: it is NOT T13, 18, or 21. I am stunned, given what we saw on the ultrasound. When the doctor points to the image of your baby's brain on the screen and shows you all the ways that it does not look normal -- and your kid is measuring a week and a half too small -- you kind of get the message that things aren't going to end well. I would have bet anything that it was T18. So, it's not, but all that means is that we are still in excruciating limbo. I am not getting my hopes up one bit. T13, 18 and 21 only make up 60% of all trisomies -- so now we get to wait another week for the full results to come back in for the remaining possible 40%. Agonizing. |
Anonymous
OP, many parents do not find out their baby was chromosomally normal until after the abortion and the autopsy. Allow yourself to rejoice that your baby is looking better than you first thought! Where there is life, there is hope. My nephew was diagnosed with DS a week after his birth. My brother was diagnosed with spina bifida in the womb, and he's in college now. There just are no guarantees in parenthood. When the moments or relief and joy come, embrace them! |
Anonymous
| Thinking of you, OP. |
Anonymous
| Oh OP, I've been checking back for your update. I don't even know what to say. Congratulations? I'm sorry? I am sorry. I don't know how to say anything to help. This week will pass, whether you want it to, whether you try to speed it up, no matter what - this week will pass. Try to do anything you can to keep yourself busy - favorite movies, favorite foods, anything. Go minute to minute, hour by hour. It will pass. Please update us when you find out something more. Sending you all my best. |
Anonymous
| Hang in there...you will know soon enough. Keep yourself busy with other things. You will have to to get through this. |
Anonymous
| Thinking of you OP. This is LIVID here. I had to terminate for anencephaly. Keeping you in my thoughts as you get through this week. |
Anonymous
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Thanks all. This is the OP. I know the time will pass -- I keep telling myself that every breath gets us closer to an answer -- but if today is any indication, it's gonna be a long, long week.
Not to mention, it's also possible that even next week we won't know for sure what's going on. The full CVS results might not turn up anything else. And the microarray results won't be back for 2-3 weeks. My next scheduled appointment is the 17th, so that's the soonest that we'll have another ultrasound unless something significant happens between now and then. Arrrrrrrrrggggh. Meantime, since there's not a damn thing I can do at this point other than research, I am obsessively (and mostly fruitlessly) trying to dig up information what could possibly be causing the symptoms we're seeing on the ultrasounds. Of course there's lots of stuff out there on T13, 18 and 21 -- but we know it isn't any of those. There is a lot less information available for the layperson about other chromosomal disorders, and precious little of it in a reliable, central repository. Any advice on information sources would be most welcome. Thank you again for all the good thoughts -- again, my husband and I appreciate them more than we can express. Please also send me patience! It's not my best quality on a *good* day -- let alone now...and lord knows I need it now more than ever. |
Anonymous
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Hey OP, I am going through a similar process. Also at GW. Also with Dr. Larsen. In our case, it turned out no chromosomal or genetic abnormalities, but rather a physical defect incompatible with life. I have an appointment at Childrens to confirm diagnosis next Monday. I will be 20 weeks along by then.
Anyway, you said this was a lonely place to be, and it is, but you are NOT alone. I remember that wait, and am fully present in the grief, and know how difficult this process is. I was probably in the same chair that you were with Dr. Larsen. And I bet you have the same situation where the US tech was doing their thing and then... it just went... quiet. And the forehead furrowed. So I'm with you, and I'm so so so sorry. Sending a lot of love and compassion while you wait and cope. It is such a hard time. |
Anonymous
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Hi OP. Ann here. I know this need for information and resolution. Take a deep breath, and I daresay, have a glass of wine. I know someone is going to scream no wine, but honestly, the stress you are under is no good either. One glass of wine will not change anything here.
Please keep us posted. |
Anonymous
| Keep coming back to check on you, thanks for updating. Cheering for you and the little one, hoping for things to be okay. |