Skip to content
trisomy 18
avatar
mrswelchiswaiting posted:
hey there.

i'm new to this board. i've been on the 2nd trimester board until i found out after an amnio that my baby has trisomy 18. i need some support. in all honesty, we thought that terminating a pregnancy because of lethal anomaly like tri 18 was ok at out our hospital, however, apparently it is not. they have basically told us that we either have to carry fullterm or find a freestanding clinic somewhere that wil do it. i wouldn't do that b/c i don't want it treated like some unwanted pregnancy, and i don't like the methods they use. my DH and i had wanted to end it early after reading on trisomy18.org and reading that other people have decided to say goodbye early. either way this is heartbreaking for us that our fist baby will not live.

here's where i need the support... i feel like a terrible person in the fact that i would have rather been induced early (i'm 16 wks) and said goodbye to our baby early, than to carry for 5 more months just to deliver a stillborn or a baby that will die within hours. we have bought all this baby stuff and done all this planning and had all these plans, and now they are all gone. i'm so depressed and sad and i just can't be excited about this pregnancy anymore. of course i love my baby, this is not his fault, nor me or my husbands, but how can i be happy?

need help. i plan on going back to work tomorrow and the thought of sitting there all day is depressing to me. at least before i could daydream about being a mama to be, but now im jus tso sad. DH and i just wish we could get back on with out lives and try to conceive again. i feel like an awful person for saying these things. i just need to be honest with someone so that maybe i can start to heal sooner than later.

thank you for listening
Reply
FirstPrevious12NextLast
 
avatar
Emma_WebMD_Staff responded:
I am terrible sorry you are going through this. You might want to ask your doctor to send you and your DH to some sort of counseling to help you both deal with all of this, it can't hurt. My heart hurts for you.

Gentle Hugs,
 
avatar
FloralMom responded:
Hi Ashley,

I know what you are going through - I'm pregnant and my baby has Anencephaly - it's a neural tube defect that cause the brain and skull to not develop properly - my baby is either going to be stillborn or not going to live very long after birth.

My DH and I did decide to carry full term, because of our beliefs, but it's still really hard. I have my baby kicking around inside of me and he seems stronger and more active than my DS ever was - it's very hard knowing that IF he's born alive, we will only have minutes with him.

You may want to check with your hospital (my hospital is Catholic, even though we are not) and they offered us the option to induce labor anytime after 24 weeks (viability), but we declined. Maybe your doctor forgot to mention the 24 weeks thing. I don't know what your religious beliefs are, but where ever they stand, inducing early would still give the baby a natural death, unlike what would be offered at an independent clinic.

My first pregnancy ended in miscarriage at 11 1/2 weeks and now I have this condition to contend with. I am completely familiar with the feelings of depression, isolation and despair after the loss of a child, and a dream. If you have people at your workplace that already know that you are pregnant, you may want DH or your supervisor to go in ahead of you and explain your situation - this will aleviate some questions and baby talk that might upset you.

Just a word of advice, Happiness does return - I consider myself very happy right now and I have less than 10 weeks before my due date with a baby that will not survive. I've named my baby with a name that means something to us. We were prep-ing my DS for another baby, he knows that I'm pregnant, but he also knows that we don't get to keep this baby for our very own. DS is going to be able to hold the baby (dead or alive) at birth. We want him to know that he had a brother. And if at the very least, if he learns one thing, I hope it will be that his mommy loves him and his disfigured brother who died so much that she suffered and was uncomfortable for the sake of their lives in an effort to show them character and the value of a life. Now, because of all of this pregnancy probably won't be an enjoyable time for you... EVER - all three times for me have been smooth pregnancies, but I HATED them so much because I was constantly fearful and worried. But you know what, I might just love my next pregnancy. WHY?!? Because the WORST has happened and I'm living through it.

Find a counselor, or family members, or a friend, or a support group, or a church - find a body of people who truly care about you and your physical and emotional state and keep those people close to you. Check out online boards for Tri-18, you may find that there is more hope than what has originally been presented to you! In my Sunday newspaper last week there was a girl on the cover with Anencephaly, she was celebrating her 11th birthday! I don't expect this to happen in my case, and pray that God would be gracious and provide my child with the best possible quality of life possible, even if it's short or non-existant.

I am truly sorry that you are going through this, but you aren't alone and you can make it through this! GL to you & you will definately be in my thoughts and prayers (((Hugs)))
 
avatar
escape092705 responded:
I am going to have my AFP done tomorrow and i recognized your screen name from the first trimester board so i was concerned. Just to let you know I cried while reading your post and its not just because im emotionally pregnant but because i cant imagine how hard it has to be.. I feel bad because here I am scared becasue i found out today I have gestational diabetes when really i shouldnt feel bad bc i still have a chance. i went to that trisomy.org website and cried even more im very sorry, I dont think you should be so hard on your self for the feelings your experiencing your not a bad person if you decide to induce early.. you are human and only you know whats right for you and DH. If i was in that place I know that the pain of delivering and bonding for days maybe weeks or months just to loose the child would be too unbareable for me. I wish the best for you im sorry for this unfortunate event in your pregnancy.
 
avatar
juliehirtz responded:
Ashley-I also posted on 2nd trimester page, but wanted to catch you here, too. I delivered a baby boy, Nathanael, stillborn at 35 weeks with full T18. He was beautiful, and loved by us very deeply. Our quad screen came back 1:30 chance for a T18 baby, so we knew at about 13 weeks that there was a potential for something to be wrong. Through multiple ultrasounds, we learned he had 2 cysts on the brain, club feet, clinched hands, partially developed heart, among other things. We finally decided to do an amnio around 25 weeks and got the results back that we anticipated...full T18. Our doctor also told us that he was unlikely to make it to a live birth, but we hoped. I spent the next 10 weeks on an emotional roller coaster...I loved the kicking and wiggling inside, but hated the fact I wouldn't get to watch Nathanael grow up and give him hugs and kisses. Well...I didn't get to watch him grow up, but I did give him hugs and kisses when I delivered him. I treasured those moments to hold him in my arms and tell him goodbye.

It isn't easy to carry a baby knowing that he isn't going to survive. I worked full time up until the day we found out Nathanael had died. There were times at work that were unbearable, but there were happy days, too.

I can agree with the PP, happiness will return...but you will always remember your precious son. Spend the time you have with him...as short as it might be. Remember those moments. It hasn't even been a year since I delivered Nathanael, but I can tell you every single tiny detail of his birth. I can also tell you that I remember the joy, the pain, the heartache, and the return of happiness.

I am now pregnant again...it was a surprise...at his baby has the exact same due date (one year later) as Nathanael had. God works in mysterious ways. For this reason, I can say...my pregnancy and Nathanael's birth was worth it all.

You are not an awful person. Continue to dream about being a mama...your dreams will come true. I often dreamed of seeing Nathanael play in the field, or sleep in my arms. It helped put me a peace that he can now do all of these things in Heaven. Don't plan for the birth of a dead baby, plan for the birth of your first son....plan to hold him, plan to kiss him, plan to love him, and prepare yourself to let go. It's hard...very hard. There isn't a day that goes by that I still don't think of my son....almost a year later.

I pray you can find peace. If you have questions, please don't hesitate to email me at hirtz@fidnet.com. There is a lady who lives close to me who also delivered a T18 baby girl....she had I have become very close friends. Only you and your DH can make the decision on what is best for your family, but I wanted to share with you what my DH and I went through and why we treasured the kicks, the wiggles, and his delivery. My thoughts are with you always.
 
avatar
tmm4041 responded:
I know exactly how you feel. I just had an amnio 1 week ago, the preliminary test show negative for Tri 18 and Downs, I still have to wait for the 'real' results that could show something else. My baby was diagnosed at 20 wks with a Diaphragmatic hernia- basically thats a hole in his diaphragm causing his organs; stomach, intestines to move into his chest. The stomach is already up into his chest, moving his heart to the left side. The left lung is affected and does not develop properly. My BF and I also considered terminating if he was pos for Tri 18. Many babies with this condition also have Tri 18. Our Genetics counselor was pretty adimate that our local hospitals would not do it and we would need to go "out of town". This is my 3rd child and I am 43. I feel your pain, all the dreams and plans have been washed away. I read that he will probably have life long lung complications and could have stomach problems and if his heart is also affected there is a 50/50 chance he will not survive. I am will soon have a fetal ecocardiagram (an ultrasound of his heart). I can not stop from randomly and uncontrollably crying. I feel like a horrible person for no longer being excited about his arrival, not to mention the stress and arguing it has caused between my BF and I. I can appreciate your honestly- I needed to let that out too. All I can do is pray and put it in Gods hands. I keep asking myself "why us"??? This birth defect occurs in 1 in 2200 births, and it had to be us. Take care and thanks for listening
 
avatar
jaiandkysmommy responded:
www.youtube.com/watch?v=th6Njr-qkq0
 
avatar
jaiandkysmommy responded:
www.youtube.com/watch?v=th6Njr-qkq0

This is the story of Eliot. I don't know if you have heard this story before, but if you haven't it's an inspiration. This story really shows how precious life is, and how a baby can affect the world, no matter how short their time on earth is. I honestly hope for you that this story touches you in a good way, and gives you some peace. When I read your story it really touched my heart, and reminded me of Eliot. This baby touched so many people. I wish the same peace for you, that his parents were able to attain. Eliot now has a younger sibling, what a blessing.
 
avatar
Ashley1312 responded:
Lurking from 2nd tri~ we are all thinking of you over there! The Eliot video was amazing I hope you watch it
 
avatar
MarisaT responded:
Hello FloralMom,

My brother and sister-in-law had a little girl born with anencephaly 4 years ago now. They carried her full term as well due to our beliefs. She only lived for an hour after birth but remains forever in our hearts. We believe she will be resurrected one day to a paradise earth.

They have an older daughter 8 and now have a healthy 2 year old boy. I wish the best for you and your family.
 
avatar
camerynsmom responded:
I am so very sorry for the news you have recieved. June 14, 2008 I had a D&E at 18 weeks for a complete trisomy 22 pregnancy. I had a 2 year old daughter at that time, and I knew that I couldn't possibly continue functioning at any kind of normal level continuing the pregnancy. That being said, I have horrible guilt and some regret. In having the D&E I didn't get to see or hold my baby. I never found out the sex (we were going to wait until birth to find out) so there is no name to go with my baby. It was the absolute hardest thing that I have ever experienced.....BUT I was able (through therapy and Zoloft!) to come to terms with my decision and realize that in my eyes, I prevented some pain and suffering that my baby would have experienced outside the womb. I still have my days where I think about it a lot, but other days I don't. DON'T feel bad for thinking what you are thinking. You have been handed an extremely difficult card and unless someone has been in that position, they cannot say what they would do... I never thought I would terminate a pregnancy, but that was before I was faced with a baby that was "incompatible with life". It was a very much wanted and loved baby/pregnancy, it wasn't just wanting to get rid of a baby.... And I will never forget my baby - I know that for sure. Best wishes for peace in your heart.
 
avatar
ladystrawder responded:
Hi Marisa T, I'm so glad you were able to encourage this young lady. I can tell you are a "sister". I have 2 babies that I look forward to seeing in the new system. They were both born alive.
 
avatar
erikabeers replied to juliehirtz's response:
Julie,

I cannot tell you how grateful I am for your honest, informative posting here. I got a call from my OB/GYN yesterday to inform me that our baby has a 1:21 probability of having trisomy 18. We're going to have genetic counseling tomorrow and hopefully to have an ultrasound and amniocentesis in the next two weeks. This is my first pregnancy, and my husband and I are absolutely terrified about losing our baby. Reading your account helped put things in perspective for me, even if it left me sobbing.

I'll try to remember to update this post with the outcome of our testing. Thank you.
 
avatar
An_237362 replied to erikabeers's response:
Hi Erika,

My husband and I found out last month that our son has Trisomy 18 and it too is our first pregnancy. It just feels so hard to trust the process when it's your first pregnancy and we too will be talking to a genetic counselor. I just want you to know that I am thinking about you and I pray for your peace in this, just like I pray for my own.
 
avatar
JonesiesGirl responded:
I thank you so much for your honesty is your post. I have been struggling with similar feelings as we just found out that our first child, a son, has Trisomy 18. The thing that is so hard, as you have said, is that he is ever so wanted and I often tell him I love him and it's not his fault.

What is also disheartening for me is seeing post after post from people not even mentioning they considered inducing early, as if considering it meant you love your child any less.

I have had so many woman at Church, at school, etc come up to me and tell me that they lost a child and they felt the worst thing that they did was go along acting like everything was okay. They didn't talk about it, or share their feelings with anyone outside of their marriage. The reality is I don't expect this pain to go away, but I hope it will not be so constant an ache.

I sincerely hope you have gotten the help you need and just know: you are loved, your son is loved and you are not an awful person.


Spotlight: Member Stories

The story I need to tell is the one about fighting infertility, through the two miscarriages and finally the light at the end of a long, dark tunnel-t...More

Helpful Tips

Looking for Tips on how to get around?
Be sure to check out the Community News Blog and the WebMD Welcome Exchange More
Was this Helpful?
12 of 23 found this helpful

Related News

There was an error with this newsfeed

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.