Hi! I was told last week at my 19 week ultrasound that my twin girl B had defects that are incompatible with life. Such as brain and abdominal defects. Anyone else been through this?? They said its usually trisomy 13/18 and by now that one has usually passed away! I've been freaking out, haven't slept, such anxiety that my doc had to out me on meds. My options are limited since I have a history if PTL and twin A looks just fine in there. I'm hoping for a miracle but I know that's not reality. Please, if you've been through this, let me know. I feel
So lost and scared!
Re: Twin B has several defects, need support!
T1 diabetes diagnosed 11/95 due to severe pancreatic injury
BFP 1 1/22/10 EDD 9/30/10 Adria b. 9/11/10 d.8/9/11, Transposition of the Great Arteries,
Pleural effusion, Kidney Failure
BFP 2 4/26/12 EDD 1/3/13 M/C 5/13/12
BFP 3 10/3/12 EDD 6/17/13 Twins! Preston and Juliet b. 5/22/13
Dx: balanced translocation and LPD
TTC since Oct 2011
BPF 02/19/12, EDD 10/31/12, natural m/c 02/28/12 (4w6d)
IVF (BCPs starting 10/30/12, ER 11/18/12, 5dt of 1 beautiful, healthy embryo 11/23/12)
BFP 12/02/12, u/s @ 6w,5d showed 2 HBs! Identical twins!!
Bed rest from 21w-35w due to short cervix, hospital bed rest from 23w-32w due to PTL
Our rainbows were born 07/19/13 (36w, 5d)
I do not have exact personal experience. We did have several risk factors during our NT scan, but in the end, both babies were born healthy. If your baby does indeed have Trisomy 18, you may find this blog helpful. It's a local family whose baby has Trisomy 18 and they decided to carry her to term. She is now over a yr old:
https://noraroseyusko.com/
6/20/11 mc @ 5wks
10/19/11 mc @ 17wks- Trisomy 18
IUI #1 4/26/12 BFN
Moving on to IVF in July
37 with DOR...fabulous
ER 7/14/12 6R 5F, ET 7/17 3 embies, beta #1 7/26: 147, beta #2 7/28: 326, beta#3 7/30: 422...ugh, beta#4 7/31: 607...hopeful, beta #5 8/2: 1280, beta #6 8/7: 7184 and u/s shows 1 possibly 2 sacs! 8/14 2 beautiful heartbeats! 9/24 we are TEAM BLUE!!!!!
Unexplained Infertility
After two Clomid cycles, three injectable IUI cycles, two IVFs, two miscarriages, and one lap surgery, IVF #2 has brought us our little boy!
TTC #2
After months of being postponed or cancelled, FET #1.3 (Natural FET) brought us twin girls!
I am so sorry you are going through this! I do not have any personal experience with this, but I know people who have (some very close to me) and am familiar with the heartache and anxiety that comes with it. I know people who have lost their babies before birth due to Trisomy 18, but I also know people who have 1 and 3 year olds leading happy lives. They do have health problems than other children, but they are part of loving families and happy, and doctors don't tell those stories to frightened parents. They often automatically tell you "incompatible with life" but that is simply not always true. I don't know why they do this; perhaps it is simply ignorance, perhaps they just want to take the easy way out.
Please check out this website ... there is more hope for babies with Trisomy 18 than most doctors will lead you to believe! https://www.trisomy18.org/site/PageServer
You will be in my thoughts and prayers!!