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Thread: Is there anything you can say?

  1. #1

    Question Is there anything you can say?

    Let me start by saying I've never lost a baby so this is totally foreign territory to me and I'm feeling pretty lost.

    I have a cousin that was pg with twin boys (her second pregnancy - one older DD). Apparently in January (at the BIG US) they found out one of the twins had a severe heart defect (among other unmentioned problems) and the drs offered to let her terminate just that twin at the time because they didn't think he would survive to delivery anyway. They decided not to and didn't tell anyone except their mothers that anything was wrong. Yesterday she was induced and delivered both babies alive. At first they both seemed fine, but after an US of their hearts it was confirmed that he did in fact have this problem with one of the valves in his heart. The dr told them there's nothing they can do - no medicine, no surgery, no anything medically available at all - and no record of any baby with this heart problem living. They said he might live 12 hours or he might live a week or more but eventually this WILL kill him. Most likely he'll just go to sleep and not wake up. They said you can't tell he's sick and the dr told them that this condition is sometimes missed and babies are sent home "healthy" only to die without warning and the condition is found in autopsy. Honestly I don't know which would be worse.

    I'm not super close to them and only found out about all this from my mom who knows them much better. I just wondered if there's anything anyone could say or do for her or them that might help. It's breaking my heart to know she's been living with this for months and still has so much more to go through.




  2. #2
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    Has they seen a specialist for their son or are they at a local smaller hospital? My oldest DS had a heart defect that can sometimes be hard to detect but once he was seen by a pediatric cardiologist they had more of an idea of what to do to help him. There are many children's hospital's in the US that specialize in rare congential heart defects. Some of the best are in Philadelphia, Boston, and Ann Arbor, Michigan.

    If there truly is nothing that can be done just try to be there for your cousin and her family as much as possible. Emotional support is what they will need. I know for us after my son died my co-workers started bringing us meals a few times a week. I would never have asked for it but it was so thoughtful of them. I was so grief sticken that I didn't even want to think about cooking and eating was a struggle too but having the food right there helped.

    If your cousin is ever looking for support a great website I found after my son died is http://www.glowinthewoods.com/ It is a site where parents from all sorts of different types of babyloss post their thoughts and feelings. It may even help you to look and and see what your cousin may be feeling in the coming days.

    I am so sorry to even have to give this advice. I'll keep your cousin and her family in my thoughts.


  3. #3
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    I'm so very very sorry to hear about your cousin's little one !!! I just ache for her .Congratulate her on her beautiful babies and let her know you're thinking of her and praying for her. A card and flowers would be appropriate and probably appreciated. what a hard situation...so sad . Praying God gives you just the right response !

    Eta...meals are a great idea! I live 40mins from Mott's in Ann Arbor, Mi (delivering at the adjoining women's hospital)...I hear they are amazing!
    Last edited by kellyowens; 04-24-2013 at 09:22 PM.

  4. #4
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    My honest opinion, there is nothing that you can do. I found out about Nathaniel's anacephaly at the "big u/s" and did share it with family. He lived for 52 minutes after he was born.

    So far nobody has been able to do anything to help. It's nice that people think of me and Nathaniel but it hasn't eased any pain.

    Let her know that if she needs you that you are there. Express your love for both babies. Then let her take the lead. I also had twins and lost one. I take comfort in having one baby with me, but again the pain is there. Her other baby will probably be the best thing to get her though. At least that's been my experience.

  5. #5

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    Got the call today that the mom and both babies were sent home. My understanding is that W (the sick twin) is missing a pulmonary artery which has been causing delays in his development for months already. They spoke with a specialist who said there is a surgery that can be done that MAY get him to 10 years old at best but he would have severe physical and mental issues from the blood not getting where it needs to go all this time. This is not his only issue though. He also developed with all his organs on the wrong sides of his body which is making things more complicated. There is more but this is all they are sharing with family right now. Long story short, they have opted not to do the surgery. His grandma says he's already turning blue and starting to slow down. The Dr made it sound like he would just start sleeping more and eventually just wouldn't wake up. S (the healthy twin) seems to be doing very well and all testing on him has come back normal.

    Thank you for your thoughts. I wish I was closer so I could cook or clean or something but we are 2 states away now - part of why we are not very close.

  6. #6

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    How terribly heartbreaking.

    I've not lost a child, but if you can somehow get some food to them -- maybe even just a gift card for a place that delivers, that would be helpful.

    My heart goes out to them.



  7. #7
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    ...such a hard decision no momma and daddy should ever have to face . Praying for them!

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