full term baby not expected to live long after birth - Mothering Forums

 
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#1 of 17 Old 11-06-2011, 06:40 PM - Thread Starter
 
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The summary: a quick ultrasound last Wednesday, which was my due date, to confirm baby's position, revealed that I'm carrying a baby with a multitude of severe abnormalities. That set in place a whirlwind of appointments with specialists over the next two days.

 

This baby is not expected to live long, should he survive the birth at all. There are significant physical deformities, as well as a very serious heart condition and an extremely high likelihood of profound neurological impairment. We don't know the extent to which the baby is further affected, though all experts (and there have been many weighing in) have prepared us to expect the absolute worst. We are, of course, awaiting the results of complete chromosomal testing.

 

So, I don't know if this is the right forum or not. I'm still keeping this baby alive inside of me. But already we're grieving, knowing what is before us.

 

Has this ever happened to anyone? It is so beyond the realm of anything I have ever even imagined, I can barely even process this. Thankfully, the hospital staff (perinatologist, neonatologist, chaplains, etc.) we've met with have all been so incredibly compassionate. Of course, until Wednesday, I was planning a homebirth. This new plan couldn't be more different.

 

I don't really know what to do.


april. 

 

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#2 of 17 Old 11-06-2011, 07:15 PM
 
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Faaaaarrrrrk. What a shock.
Can I just encourage you to get in touch with 'now I lay me down to sleep' or equivilent service?
They can do wonders with photos, even if the physical side of things are a bit tricky.
I dont have time for anything else at the moment, but I honestly believe that the photos will be invaluable. And theres no charge.

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#3 of 17 Old 11-07-2011, 06:43 AM
 
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No experience, but couldn't not post.

 

I'm so sorry. :(  ((((hugs))))

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#4 of 17 Old 11-07-2011, 06:50 AM
 
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I am so sorry mama. Your family is in my thoughts and prayers.


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#5 of 17 Old 11-07-2011, 07:08 AM
 
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I am so sorry. (((hugs))) Blessings to you.

 

As horrible as it is, use this time to plan: who will be there, who will take pictures (I too recommend NILMDTS), what clothes you will take, etc. If you have a doula, plan for her still to be there. I know it sounds odd, but if the opinion is honestly that the baby will not survive birth or long afterward, regardless of interventions, you can still have a homebirth. There are midwives who are willing to assist at a birth like this and if that is what you were really wanting, and still want to, you probably can.

 

Whether or not this is the "right place to hang out", you certainly can and are welcome.


Wife to DH for 17 years, homeschooling mom to 3 girls (15, 13, 12), 2 boys (11, 7), and
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#6 of 17 Old 11-07-2011, 07:38 AM
 
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Oh you poor mama. I am so sorry you are facing this heartbreak.

I had a friend whose baby girl was born at home with trisomy 13. It was complete surprise to them, and she was not expected to live for very long after birth. I thing she lived for over a year, during which we all held her, loved her, kissed her everywhere and helped her parents cope with a complicated special needs baby. She was held in our community as an angel on earth, and we tried to give her as much human love as we could, since that's what she was clearly here for. When she was in my arms I could feel her all around me and I couldn't help but smile, she was blind and deaf and so I could only open my heart and feel her.
I still cry when I think of holding her, not because she wasnt perfect, or because she would never grow up, but because she was pure love. Pure love. And when she died she was in her daddy's arms, at home, with candles lit all around.
What I have learned from this is that the children who come for a short time are gifts and for however long they stay we are lucky enough to be allowed to love them dearly. I am in no way discounting the immense grief that will come as well, because that is significant too, but being fearlessly present in the moment of your Childs life and death is the biggest gift you can give yourself and your child. When you look back on this is five years I hope that you are able to say that you created and held the space to the best of your ability for your angel of pure love to experience your human love without hesitation or fear of the moment, no matter how terrible the moment is. Your baby has known nohing but your love since the beginning, dont forget, the baby is pure love.

I wish you all the bravery and presence of heart in the world. I hope you have a strong community to hold you close while you grieve. Don't forget that you can still protect the space that your child comes into and moderate the amount of interventions he/she experiences, the same way you wanted for your home birth. everything that you can do to keep the experience yours will help you in the future.

And come back here to tell us your story.

Yurt livin mama with three free range wild things 11/05, 10/07, and a wee new squish 7/13, and one two three four five little angels. Knitting junkie, sewing obsessed. Falls asleep to the sound of coyotes singing.
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#7 of 17 Old 11-07-2011, 07:59 AM
 
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I second matushka anna on the possibility of a hb. If they are going to try to resucitate then that probably isn't an option but if they aren't than you can do that peacefully at home. NILMDTS is awesome and will be invaluable. They may be able to do labor and birth photos as well as the newborn shots.

I would take this time to do absolutely everything you can to prepare. Get casting materials for hands and feet, something to keep hair clippings in, if you don't do the hospital route make sure you have ink and paper for hand and foot prints, etc. You can also research burial/cremation options, memorial services, songs, etc. It all seems a bit morbid but when we lose a little one this is all we have. Enjoy every moment you can while he is still alive.

I had a friend who was surprised at birth witha baby w/ trisomy 13. She lived 2 wks and they never set her down.

I am so sorry you are going through this.

You are on the right board and your posts, thoughts, feelings, etc. are all welcome.


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#8 of 17 Old 11-10-2011, 12:51 PM
 
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Oh April.  Words cannot express how sorry I am that you are going through this.  I don't have any advice, but just want you to know that I am thinking of you and so is the DDC.  Please know that the club is here to support you as well as these forums.   Please update us as you are able.

 

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#9 of 17 Old 11-10-2011, 01:14 PM
 
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I'm so sorry April, I wish I could offer you more words of wisdom. Blessings to your family.

Mama to DS (12/11/07) and partner to DH (08/08). Expecting #2 late November 2011!
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#10 of 17 Old 11-10-2011, 01:15 PM
 
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I am so sorry. I haven't been in your position before, but I volunteered with a local hospital's L&D bereavement team. I, too, recommend using this time to think about how you can preserve the memory of the time you had with your little one. The suggestions below are great. I also highly recommend NILMDTS. They are wonderful people, and do a very good job of preserving those memories. Many funeral homes and cemeteries offer free or reduced fee services for baby loss. If you're delivering at a hospital, they should have contacts already in place. It sounds like there is a good team in place to support you, as well.

I don't think that any of us "want" to belong in a baby loss/miscarriage group, but you are welcome here. We all hurt, no matter how early or late we've lost our little ones. Just having somewhere to turn when I was grieving after my miscarriage helped so much to heal. grouphug.gif


Quote:
Originally Posted by theboysmama View Post

I second matushka anna on the possibility of a hb. If they are going to try to resucitate then that probably isn't an option but if they aren't than you can do that peacefully at home. NILMDTS is awesome and will be invaluable. They may be able to do labor and birth photos as well as the newborn shots.
I would take this time to do absolutely everything you can to prepare. Get casting materials for hands and feet, something to keep hair clippings in, if you don't do the hospital route make sure you have ink and paper for hand and foot prints, etc. You can also research burial/cremation options, memorial services, songs, etc. It all seems a bit morbid but when we lose a little one this is all we have. Enjoy every moment you can while he is still alive.
I had a friend who was surprised at birth witha baby w/ trisomy 13. She lived 2 wks and they never set her down.
I am so sorry you are going through this.
You are on the right board and your posts, thoughts, feelings, etc. are all welcome.


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#11 of 17 Old 11-10-2011, 02:58 PM
 
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I'm so sorry. I hope it helps even a little bit to know that the thoughts and love of the women from this forum are coming to you from all over. 


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#12 of 17 Old 11-10-2011, 04:43 PM
 
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I'm so sorry, mama. (((((((((((((((((HUGS))))))))))))))))) 


Krista; blessed mother to four earthly beings and three non-physical. Basking in my beautiful rainbow. 
 
 

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#13 of 17 Old 11-11-2011, 05:27 AM
 
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I'm so sorry, April.

Megan, loving her sweet rainbow1284.gif boys, born Aug. 2008 and Feb. 2011, and their sister, born still March 2007 candle.gif
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#14 of 17 Old 11-11-2011, 06:01 AM
 
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I'm so very sorry. I am sending you thoughts of strength and peace.


DS, 10/07. Allergies: peanut, egg, wheat. We've added dairy back in. And taken it back out again. It causes sandpaper skin with itchy patches and thrashing during sleep. Due w/ #2 late April, 2012.

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#15 of 17 Old 11-11-2011, 11:02 AM
 
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April, my heart just breaks for you and what you're going through. Its horrible, just a nightmare. I hope you can find some peace, comfort and healing in the coming future. I wish my tears could just take away an ounce of the pain you're feeling. I think its a beautiful thing that your baby was able to have at least 9 months of comfort and love in the warm cocoon of your body. He got to hear your voices and feel your hands on him as he moved. His life, though short, will have been filled with love. 


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#16 of 17 Old 11-12-2011, 07:04 AM
 
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Quote:
Originally Posted by FaithF View Post

I think its a beautiful thing that your baby was able to have at least 9 months of comfort and love in the warm cocoon of your body. He got to hear your voices and feel your hands on him as he moved. His life, though short, will have been filled with love. 

This gave me so much comfort when I lost my little girl. Her life was so, so short but she was embraced and loved for every second of it.

Thinking of you and your sweet babe, April.


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#17 of 17 Old 11-23-2011, 09:56 AM
 
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Thinking of you.

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