I need ideas to help a friend who is about to lose their newborn

[undertheseas]

Friends of ours have tried for years to get pregnant and on their last try with invetro they conceived twins. We were all so thrilled for them after all they had been through. This week they had to do a c-section early because one of the twins was in distress. She has a rare chromosome disorder and the doctors said it will just be a matter of days or weeks. After all they have been through just to have a baby and now this.......it breaks my heart. I know they are blessed to have one healthy baby but it's still gut wrenching to lose another. I've offered to bring food, do laundry, run errands but I feel like there's something more I should do. I had made them a scrapbook for both girls as a shower gift, I wondered about making an album just for this angel but then I wondered if that would be weird and maybe some people wouldn't want to take pictures to remember her so ill. Any suggestions or advice would be greatly appreciated and especially prayers for this family.

 

[Wickedmom75]

Encourage them to take as many pics as they want, they will help with the healing process. No other advice just keep being the thoughtful person you are being.

 

[Mackey Mouse]

I think you have done a great job as a friend and I agree with the previous poster to encourage them to take pictures of their family as it is now and that they hold each other close as they go through the loss of one of their daughters..

 

[undertheseas]

Thank you! I just feel so badly for them, it makes me appreciate my own kids so much more.

 

[safetymom]

I think you are being a great friend. Just be there to listen after the baby passes. Sometimes friends don't know what to do but just be there.

 

[deanac24]

You have no doubt been a great friend. It is hard to know what to do at a time like this. I think pictures will be a great memory for the parents for years to come. A scrapbook is a great idea. It will be a cherished memory.

 

[undertheseas]

Thanks guys! The baby passed away but I haven't heard when the services will be yet and maybe they will keep it to family only. I hope to finish a scrapbook soon. Thanks so much for your help!

 

[Deesknee]

prayers to all. Friends like you are true treasures.

 

[StarLight StarBright]

I'm so sorry for your friend who has lost the baby. I truly know what she is going through. I lost one of my twins. The cause is different from your friend though, I went in to labor at 24 weeks, and it couldn't be stopped. My son died after one day. That was 4 years ago, and my daughter is just my treasure. I think the scrapbook is a wonderful idea. I treasure my photos that I have of my son. Your friend might not want to look at them right now, but one day, she will be so happy to have them. You might want to mention a group to her that I found so helpful. It is Elimbo on Yahoo groups. It is for people that have lost a multiple. Although I have not been on there in about 2 years, it was extremely comforting in the first year or two, to turn there, and realize I was not the only one who had been through this. You are a good friend to her, and just sit and listen to her, if she feels like talking. People said the dumbest things to me to try to make me feel better, so just having someone to cry with, will be good for her.

 

[undertheseas]

Thank you so much StarLight, StarBright! I'm very sorry for your loss. I think the group would be a huge help because it's filled with people who have been through the same thing and they can give support and advice that I can't. Thank you so much!

 

[StarLight StarBright]

Thank you so much StarLight, StarBright! I'm very sorry for your loss. I think the group would be a huge help because it's filled with people who have been through the same thing and they can give support and advice that I can't. Thank you so much!

You are very welcome!I can't say enough about Elimbo...even though it's a sad sisterhood to be a member of, those women on there are wonderful. There were lots of women on there who had done IVF too. I'm sure she will love it.She is lucky to have such a supportive friend as you!

 

[travellady]

Just reading this now or would have written a reply earlier but have been traveling the past several days.

We lost a daughter at 3 months back in 1992 due to a rare genetic disorder called Trisomy 18. It was very difficult learning just after her birth that she'd probably live no longer than 1 year. Nevertheless, we took her home and gave her all the love we could in the months she was alive.

I appreciated people coming by just to talk and visit and help me get my mind off the inevitable. After she died, I appreciated acknowledgement and a simple "I'm sorry, we're thinking about you" or words to this effect. Some people were too caring and didn't give my husband and I the space we needed to heal, while others didnt' know what to say so avoided us (you know, the things like heading down the other aisle in the grocery store when previously they would stop and chat).

Realize there's not a ton you can do to help them, other than being an ear when they need to talk, and recognizing their need for space.

I have a healthy set of twins who were 13 at the time, and then in 1993, 16 months after Katy died, a little baby boy "showed up on my doorstep" (well not quite but we found out about him a week before he came to live with us) who we adopted and have raised ever since. He's now 13.

That story gets better. His birth parents eventually married, and had a little boy last July. We live on the west coast, Washington state, they in the southeastern Massachusetts, but we headed back east to celebrate the 4th of July. Tomorrow, my 13 year old will meet his biological sibling for the very first time.

We all travel a bumpy road, some of us come upon bumps and pits that seem bigger than what other's have to experience. But when the road smooths out between those bumps and pits, we appreciate the path that road is taking us in ways many others can't imagine.

 

[undertheseas]

Travellady, I'm so sorry for your loss! This baby died of Trisomy 13, I assume it's a similar problem but just on a different chromosome? That's so exciting for your son to meet his biological sibling but I imagine it's confusing too. You seem to have such a great outlook, I really admire you and StarLight, StarBright for your strength.

I'm having the problem that you described, trying to find the right balance of being supportive without smothering and I don't know if it's easier to not mention the baby or not. I don't want to seem unfeeling but I don't know if it is easier for them not to talk about it. Maybe I'm overthinking it but when I sent the sympathy card I couldn't ignore the living baby either so I sent a baby card too but made sure it didn't have any writing on the inside.

 

[Suburbanmom]

I can offer nothing more than my prayers for this family. You are a good friend to them.

 

[carrie s]

I had a miscarriage years ago. The best thing you can do is let her talk about the baby.When I had my miscarriage people didnt want to talk to me about my baby because they didnt want to upset me,thats the worst thing you can do.The thing that meant the most to me is when my husbands grandma phoned me and cried for my baby.She was the only person to do that.It made me feel like I wasnt the only one who cared about this baby being gone.It helped so much that someone else was also mourning for my baby.

The scrapbook is a wonderful idea.I had started a baby book for my baby,theres not alot in it but the only thing I have of my baby is that and a ultasound picture.I think the scrapbook will mean alot to her.

 

[travellady]

We just got back home from the East Coast 3 days ago so I'm busy catching up on email and discussion boards such as this one.

Undertheseas, the fact you're asking these questions and thinking about what this family needs means you are probably pretty in tune with their needs. It tends to be people who don't ask who either give too much, or too little simply because their not aware or find it easier to avoid the topic.

Have you directly asked your friend she'd like from from you? I know at times I think I know what other's want, and keep trying to do the right thing, but forget to simply ask a questoin such as "I want to be here for you, but am not sure exactly what your needs are at this point. What can I best do to help?". Your friend may not exactly know what she needs, but it does open the door and if she can't answer now, she'll know she has somebody to turn to when she's ready.

Yes, Trisomy 13 is a nasty cousin of Trisomy 18. What many people don't know is Trisomy 21 is a relative as well but it's one most of us are familiar with, Down's Syndrome. It's interesting that not all trisomies are as fatal as others and is one of those harsh curiousities of nature. And 13 and 18 are extremely rare, that's why few people hear of it until it affects them directly. One reason it's so rare is babies with this disorder are typically miscarried within the first 3 months after conception. Those that make it through, and there's very very few, are most often born stillborn. Those that survive birth, rarely see a 1st birhday.

On a final note, and as I mentioned in my earlier post, my 13 year old met his biological brother for the first time on the 4th. Being 13, he wasn't over emotional, actually nonchalent, but I could tell he was closely assessing the situation. And it was fun for me to spot simialiarities and difference between the two. Both are handsome young men for sure!