I am carrying a baby with what I've been told is a life-limiting diagnosis ( t18), late pregnancy.

We made the decision to continue our pregnancy, having found out at a late stage. (BTW- parents who make a different choice- that is entirely your decision and I would not judge you for it. Trust me, I understand the complexity of the decisions for each and every mama and papa. Unfortunately some of the "support" out there, where I live, seems very judgemental about parents' decisions and this really disgusts me.)

As I go through this, I am experiencing ups and downs. Other times I'm numb. Often I'm so angry at friends for past comments about motherhood/pregnancy/child-rearing/the future. People have said the most shallow things in the past but they haunt me.


I've had a few deeply offensive comments too- since the diagnosis of my baby about me and the baby AND the future- which I can't even share as I feel they could upset another parent somewhere. But trust me, they have been nasty.

I tend to dwell on the bad stuff and not the support of people who are trying so hard to help. I think it's lonely as many people don't understand the pain. It seems easier to ignore people altogether.

Plus- I HATE the feeling of being fodder for gossip and some people don't seem to want to help so much as to find out more.

Then I'm just really really sad as I feel my baby kick but I am scared of the future when I don't feel anything.


If you have been given an upsetting diagnosis or ever have been in the past - I want to say I am here too. Also to the mothers and fathers who have lost babies in the past- I'm getting a taste of the sadness of what I imagine might feel like a lost or radically different future and it's horrendous.
Take care everyone.

Just to say- I have also heard the diagnosis being called incompatible with life/lethal so I haven't been given hope of a different outcome.

Gerri17–I am so sorry to hear of this diagnosis. I’ve not been there—my daughter died as a result of a complete, concealed placental abruption sometime between weeks 24 and 28, seven years ago. A friend experienced what you did and decided to carry the pregnancy as well (I’m not sure what the diagnosis was and never asked). This morbid curiosity is awful. You’re making the best decision for you and no one can know what they would do in your shoes. I can well imagine the nastiness—we’ve all been subjected to it. This is a safe place to dump it out if you need to.

Sending you peace, mama. And thinking of you.

AB, thank you for your very kind reply. It is so sad to hear about your daughter. I don’t have words to express how sad that makes me- that you went through such hardship yourself. My thoughts are with you too. Thank you for sharing.
I appreciate the reply.
I know I’m my heart and soul that the real sadness is my feeling about my child right now.
I am hopeful I can be strong and rise above the other stuff.
Sharing has helped.
Xx
Peace to you all also.

Hi Gerri17,

I’m so sorry to hear about your baby. I just wanted to say that you are not alone in carrying a baby with a life-limiting diagnosis. I was also told my baby was ‘incompatible with life’ but I wish I could go back and tell that doctor that he was wrong. My baby was alive the entire time I carried him inside my womb and after he was born, he lived for a little over an hour. My baby’s diagnosis was different but I was able to find peace throughout my labor and birth experience.
You aren’t alone in feeling a roller coaster of emotions. Though I hope the remainder of your pregnancy, you may find peace. Wish I could say more, but the wound is still fresh for me as well. My baby boy would be two weeks old tomorrow.

Sending you lots of hugs.

Hi Dcm

I am so touched by your reply and I’d like to thank you for the selfless act of imparting these words of hope to me.
Thank you for your wishes of peace (especially given your own exceptionally tough period) and for saying that. You are helping to give me new perspective. I am going to concentrate on baby now.
X
Please and more importantly can I convey alongside my thanks, my sadness for you and your baby. May they rest in peace. You sound like a wonderful, selfless parent and thank you for the inspiration which your perspective has provided.
Xxx

I don’t know the details of your situation but when I received that horrifying diagnosis, I felt like my baby was already gone, ripped away from me in an instant. It certainly was hard to try and have a positive outlook but I really tried to appreciate the time I was having with him. The first few days I could only think of all the things that would never be and it was crushing. But with time, I tried to be thankful for every kick, even the uncomfortable ones! I also focused on the birth experience I wanted with him which helped as I went into labor. The birth was a beautiful experience; I birthed him in a tub, directly into my own hands. He was the most beautiful baby I’d ever seen, even though he wasn’t “perfect” from a medical standpoint. He was, and is, perfect to me.
We may not know why these things happen but these babies are put into our life for a reason. I truly hope that you are spared from any more rude or offensive comments. No one is in your exact situation. I’ve certainly gained an entirely new outlook on life having gone through this experience. I’m very happy to have found this site as well; none of us are alone, even though at times it feels that way.
Your baby knows you love them. I’ll keep you and your baby in my thoughts and send positive energy your way.

xoxo

Thank you very much dcm. A lovely post. You are so kind to send the positive wishes. I hope I can find meaning in all this. Your thoughts are very helpful to read. Your love for your baby boy is so clear from what you write and it's very beautiful (although it makes me teary) to read this account of meeting your son. Absolutely gorgeous. xx


I hope you get to rest and feel supported now too, on your journey.
Maybe in time to come - in the future we can chat more when we're ready. In the meantime take care. You're right -it's good to realise one is not alone.
xxxx

I’m so sorry that you’re going through this and I’m so sorry that you feel alone. I just lost my son to trisomy 18 on April 26th. I don’t have much advice because the whole situation is just too horrible and sad to put into words, but I will say that I felt immense joy upon meeting my son. To me, he was perfect and beautiful and the time we had holding him is probably the happiest (and saddest, simultaneously) I have ever been. He was just so sweet and innocent, and just plain beautiful. I felt peace in those moments with him. Please take photos and hire a birth photographer if you’re able. You’ll want to remember every feature of your sweet baby.

Thank you Lynette for sharing. I'm so sorry for the heartbreaking loss of your son. I hope your days are ok or as gentle on you as they can be in this period. Xx I hope you get the chance to take care of yourself.
I am also grateful you shared those precious moments with me. I will take your advice and Cherish the time.
I am glad we have connected. xx

I want to thank you all so much for sharing your stories. Our daughter was diagnosed with trisomy 16 at our 20 week scan. I will deliver her soon and your words are so comforting. I feel like I have already lost her and I am ready to see her and say goodbye. Any advice for getting though the next weeks/ months would be so appreciated