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Trisomy 13 Dealing with the lose Rss

2 weeks ago I had a scan to find out the due date of my baby. They found a brain abnormality. I had more tests done and found out that my little baby girl had trisomy 13. With the possibility that she wouldn't make it to the birth or live long after, we decided to have a termination. It was one of the hardest things I have ever had to do.
We started the process last Wedensday. Because i was already 17 weeks, they had to start the labour prosses. It took about 28 hours to give birth to our baby. She was only very small and had some abrormal features, but to me she was beautiful. The hospital staff were great. They dressed her for us, did foot prints and hand prints and took photes for us to keep. We named her Faith. We stayed with her for severial hours before saying good-bye.
It is taking time to deal with what we have done. But we have 3year old girl at home. She now dosen't have to deal with the lose of her sister until she is old enough to understand.
Just wanting anyone else who has has to have a termination to tell me I'm not alone.

[Edited on 14/07/2009]
Hi,

I just wanted to say I'm sorry. I gave birth to my daughter at 5 months, she had passed due to trisomy 18. If you would like to read all my posts, just click on my name in purple to hear my story (Sorry, I don't like retyping it all the time)

We were lucky in that we didn't have to make that decision, God made it for us. We were due to have our big scan the day my waters broke, to think what they would have had to tell us & the decision we'd have to of made is horrible.

Again, I'm really sorry.

Ur story sounds like I am reliving May 2008. I was 15 weeks when I found out that our little butterfly had Tricomy 13. ( I actually went in for my 12 week ultrasound knowing my dates were correct however found out I was 15 weeks - I had had a period in between which some suggested was a miscarriage that did not follow through) It took us a week of tests and 2 visits to different hospitals to get different opinionss, I found the only way we could deal with the horrible decision was to do a pros and cons list..... i know it sounds horrible but I could physically and emotionally not deal with the decision. WE decided to terminate the pregnancy as our major contributing fact was our 3 yr old boy waiting for us at home. I however got the option only at 1 hospital to surgically terminate rather than go through labour. They have an 18 week cut off and although it was the most horrible thing I have ever had to do (especially sitting in the clinic watching all the flat bellied girls going in to talk about having an abortion while I was there with a big 17 week pregnant belly holding on for dear life) I knew that it was my only option emotionally as I needed to be strong for not only my son but my husband who I know was trying to be strong for me but was slowly breaking.
It was not the easy way out by any means, 2 months later I had a flushing shall we say and found to have got an infection and retained products (as they call it) Back into hospital I went for more surgery and emotional pain.
I will say the staff at the Womans Hosp in Melb are amazng and their support was fantastic, no-one ever judge us (my biggest fear)it was always just emotional support. (genetic councilling hekped so much) They also put me in touch with a support group for woman who had to make the same decisions...I cried the whole night.
Now 2 years on we still think of our SPECIAL BABY we call butterfly. We are now 29 weeks pregnant with baby number 3 and everything is going along swimmingly. only 11 weeks to go.
hey there.. i just wanted to say i am so sorry for your loss.. i also wanted to say i have no idea what you are going thru, as i have never been in your position. - i do however have a child with a severe brain condition, but i just wanted to say never let anyone make you feel bad or feel judged.. i believe in this situation you need to do what you need to do, and in your heart you know what decision that is for you.. the only people who would ever make you feel bad are people who have no idea of the reality..
anyway, i wish you and your family well, and i hope the pain of your loss eases a little each day..
haley
i just want to reassure you that i beleive you did the right thing

my dd was born with breathing difficulties (full term) and was in hosp for 3months

at 8months she cut a single front tooth

at 12months she was hospitalised for more breathing probs

now at 18months she is on home oxygen

she does not have a confirmed diagnosis but the geneticist thinks she has mild holoprosencephaly

i love my dd to bits but her health issues have taken their toll on my family, my ds who is now 3 and my marriage

i didn't know she had health issues prior to birth

i dont know if this is coming out right - but i beleive if a child is incompatible with life then it is unfair for it to be in unnecessary pain

i am blessed that my dd is ok and her troubles are on the mild spectrum - but its always in my mind and does take a toll on my family
Hi There,

Firstly I would like to say I am so sorry for your loss and secondly please realise what you did was such a sacrifice for your angel baby. You saved her from pain and the struggle she would have had to endure for the time she was alive.

I didn't have a child with Trisomy 13 but I did give birth to my DD Finley at 22 + 5 weeks in January this year. I was medically induced to have her and it was so traumatic. I found out the week before I had her that she had hypoplastic left heart as well as some other major heart deformities. In a nutshell she did not have the left side of her heart and if she did not die before birth or giving birth would have had to have surgery straight away, which more than likely would have killed her, if not then another two rounds of surgery we're needed where a shunt was put into her heart so it only needed one side to work. If she lived through all the surgeries, she would never be able to live a normal life and participate in activities and by the age of 9 would need a donor heart as her heart would simply give up if it made it to that age. If she did get a donor heart they don't last that long and would need countless donor hearts through her life if she made it that far. And unfortunately organ donation isn't high on this countries agenda. Donor organs just do not become available very often.

I think about Finley all the time and what should have been. I actually got pregnant straight away again after loosing her and was yesterday at a baby shop for weeman in my belly and i saw the baby rattle i had my angel cremated with and it made me so sad.

What you and I both did was out of LOVE for our babies not because it was the easy way out - You are not alone. I cannot wait for the day I hopefully make it up to where she is and get to give her a huge hug. I like to believe my family are with her and are looking after her for me and giving her heaps of cuddles until I get to be there.

I wish you nothing but the best

Sally
Today 4 years ago we lost our butterfly. Can not believe it has been 4 years? Its still feels like yesterday, I can still see myself being wheeled down to the operating room. But in 4 years we moved states and started again, and now have a beautiful girl who is now 20months and everything we could have hoped for. My now 7 yr old still remembers our special baby we called butterfly. He is so precious. Best wishes to all
So, so sorry for ur loss. I had a chrosomonal issue, which led to miscarriages, but I never had to terminate. It would be absolutely the hardest decision that a person would have to make. Try to keep strong and I wish you all the very best for you and your family.
You are not alone. Last Tuesday we found out that our son had trisomy 13, we decided to terminate the pregnancy, so we wouldn't prolong the inevitable. I was booked to be induce at 27 weeks pregnant on the thursday morning. 15 minutes before they induced me, I gave birth to my baby boy Drake. He had 6 digits on each hand and a wide nose which suggested brain damage.
He was the most beautiful baby I had ever seen. If it wasn't for my 2 yr old boy, I would be a complete and utter mess. He gives me the strength to get out of bed and get on with life the best I can.
i can totally understand your pain. i have a genetic condition which is a 50% chance of being passed on, very high odds. i unfortunately cannot afford a treatment called pgd, because along with ivf it would run into the $10 K plus mark. to find out whether or not i had passed this condition on is to have a cvs, which is done at 12 weeks.
unfortunately with my last pregnancy, i had done such a thing. i had made a choice at the age of 13 that i didnt want my children to have this, so chose to 'interrupt' (nicer word chosen by the geneticists). at 15 weeks i had a dc done under a ga. even though for me it was the right decision, it was one of the worst experiences of my life, especially as i still had the sensation of carrying my baby.
i was given a certificate for proof of life, and my baby boy's ashes. i still have them as i dont know what i want to do with them yet. i was due on march 17 this year
the pain does ease.. but never totally fades.
Hello Everyone i am Sheri from Houston Tx,i am on here to share my testimony,so that people who are hopeless can gain from it,when i was 19 i had a boyfriend,3 months after we met i got pregnant for him,i told him about this and said he s not ready for babies now,i had to abort it,this happened 2 more times and the doctor told me i should never try abortion again in my life,but we made a mistake again and i went on with the abortion by using some medication,i had a lot of bleeding and i was rushed to the clinic where i was told i had a damaged womb,the doctor said i wont be able to conceive again in life,few months later i and my bf path ways,i got married when i was 25,i and my husband tried all ways to get baby with no luck,i tried for almost 20 years,when i was 44 i read about a powerful woman,i visited her website and i read a lot of testimonies,i decided to contact her for help,she told me i am gonna conceive and have baby boy,she said i should provide some information,i did and she said i should go meet with my man and check for pregnancy test in 3 to 5 weeks,i did all she said i should do,surprisingly i did the test at exactly 5 weeks and it was positive,i couldn't believe it,i went to the doctor to confirm and it was positive,months later i put to bed and i have a baby boy,I am a living testimony of this great woman,she made the impossible possible,if not for her i wouldn't have become a mom,she is really the lord sent.
I am writing this to tell people its not over until its over,never give up and keep trying till the end.
If you have problems or delays in getting pregnant you can visit her website to learn more.

www.iyalajeabiye.webs.com

Sheri
I buried my Baby Princess Shachah Light Palace Jedidiah 6 days ago. She was diagnosed with Trisomy 13 after 7 days of her birth. Nothing was detected throughout my entire pregnancy scans (which were so many! more than i can count). Our baby Princess was too perfect for Tri13 and her death came so suddenly on 21st July 2013. We were told she won't be able to open her eyes, eat normally etc- she opened her left eye on day 4 and had a good long look at daddy, she started latching and sucking on mommy's breasts, she was improving every day (even her voice became clearer! and we can begin to hear her voice) and looking healthier and better until she passed. Her passing was shocking as we suspect it could be due to sodium overdosed and we were never asked for permission/consent to give this to our child and we never saw the result that ended on the conclusion that she needed sodium dosage. She had 3 big spills the night she passed and she shook her head quiet vigorously too, we called the doctors but they only send the nurses to tell us "there is nothing they can do" our daughter was already dead to them. We are still asking questions, and no answers and we are still seeking and researching; though we knew and accepted the diagnosed,but we are not convinced that it was Tri 13 that took her life on the morning of July 21st. We identify with every parent that have lost a child (I don't even know how to describe or explain that feeling) Our Princess is our first born of after a hard long 5 years of TTC. We love our Princess so much and missing her everyday. I have copied a tribute video of her here and we pray it will be a blessing to all who will view it. She is the best thing that has happened to us, we enjoyed the 9 months with her in the womb and her beautiful memorable 10 days here on earth. We missed you Princess.
https://www.youtube.com/watch?v=hTDPFOHPpW0
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