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full term baby not expected to live long after birth

post #1 of 12
Thread Starter 

(x-posted to pregnancy and birth loss, because I wasn't sure where this belongs)

 

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.

 

post #2 of 12

hug.gif April. I am so sorry for the pain you and your family are going through.

 

I do know two people who have gone through something similar, though not exactly the same; one person was a friend of friend and she learned before the birth of her daughter that her daughter's heart did not have four chambers and likely she would not survive for more than a few days after birth (which was the case) and the other person was friend for whom the information before birth was much less clear (e.g. her baby could have serious issues which would likely mean she would only live a few days or her baby could have much less serious issues and survive and have special needs; her baby did survive). I know that neither of these are not the same as the situation you are in, but since you asked "Has this ever happened to anyone?" I thought it might be a comfort to know that there are others who have faced something similar. I don't know if this is something that helps you, but sometimes when I am dealing with something painful, it helps me to know that in this universe, there are others that walked this journey and I try to draw, spiritually, on their strength in times of difficulty.(If this is not helpful to you, please disregard; what matters is what works for you and we all need to do what's best for us when things are hard.)

 

I am so glad to know that everyone you've encountered has been supportive and compassionate. I encourage you to continue to reach out to them and ask about resources for parents in your situation; there may be grief/support counselors or groups that might be of help and support to you. I also encourage to reach out to anyone who can provide practical support (meals, etc.) to you and your family during this time so that you can focus on doing whatever you need to do to care for yourself and your family during this time.

 

You and your family will be in my thoughts. hug.gif

post #3 of 12

I'm so sorry.  I have a friend who learned that her baby was anencephalic before he was born (no brain developed, just a spinal cord).  One thing she did was hire a photographer to take pictures of her baby boy after he was born.  He died 20 minutes after birth, as expected, but my friend has some beautiful pictures of him.  Another thing she did was embrace the time before his birth as time with her child she knew would not live.  She talked to him, sang to him, and celebrated every movement she felt while he was en utero, because she knew that was the only time she would have with him.

 

My thoughts are with you as you travel a difficult and painful road.

post #4 of 12

I pray that the story of Audrey Caroline will bring you peace and blessings.
http://angiesmithonline.com/2008/01/the-beginning-of-the-story/

post #5 of 12

Quote:

Originally Posted by JayGee View Post

One thing she did was hire a photographer to take pictures of her baby boy after he was born.

 

http://www.nowilaymedowntosleep.org/

 

Now I Lay Me Down to Sleep is a national organization of photographers who volunteer their services for moments like these.  Please ask someone on your behalf to contact the organization to see if there is a photographer available in your area.  My SIL gave birth to a full term baby who had passed away in utero shortly before and the photographs she has from that day are her most treasured possessions, even if they might be too difficult to look at at first.

 

I wish you the best possible outcome for your baby and that you may find peace with whatever may come.  Hugs, mama.

post #6 of 12

I too was to have a homebirth.  But I didn't.  

 

I am so very glad to: have pictures of my Baby, have held her, have had a funeral, have her ashes (rather than burying her) so that she can be buried with us once we get a family plot....

 

We didn't know that we could have bathed and dressed her.  We were given foot prints, but not hand prints.  I wish I had her handprints.  I wish I had more pictures of my husband holding her (I only have 1).  I wish there was a picture of her whole sweet little body (not just her face).  

 

For the funeral reception we had a potluck luck so we didn't have to worry about food.  

 

An Exact Replica of a Figment of my Imagination was a book I liked reading.  

 

I'm am so sorry that your arms will also be empty.  I hope you are able to find restful sleep tonight.  

 

 

post #7 of 12

Thinking of you, OP. hug.gif

post #8 of 12

You and your family are in my thoughts.  I wish you the best in finding peace.

 

post #9 of 12

I am so sorry for your news, rhombus. You will be in my prayers. There are many women who have carried babies to term who were not expected to live long afterwards. This website, www.benotafraid.net, is for parents who have received a poor prenatal diagnosis. Maybe it can help you feel less alone. Here is another one: http://www.mychildmygift.com/serious_prenatal_diagnosis_discussion_forum.htm

post #10 of 12

While I have never experienced this pain myself, I was the postpartum and baby nurse for a mom who had a baby with Trisomy 13, in which the infants don't live long after birth.  This was almost 15 years ago and things have changed some, but I can share with you what we did for her, things that are do-able in any hospital with a high-risk unit:

 

We let her keep the baby with her as much as possible.  When she was resting, we put the baby in a private area of the nursery so that family members could come in and take their time to see the baby and say good-bye.  Her postpartum room was in an area of the unit as far away from moms with crying babies and joyous families as possible in order to spare her the pain of hearing those other babies cry when her own little one wasn't long for this earth.  She held him, dressed him, bathed him, and held him some more.  We got pictures for her and with her.  We called in the priest (the family was Catholic) so the baby could be baptized.  We encouraged her to talk, to share her pain, to cry...it's important to cry and grieve for the life you've carried inside you for all this time.  It's okay to hurt and be in pain. 

 

Most hospitals now have a special place for babies that pass on either before birth, during birth, or shortly after.  I worked at one here in our area right before I got sick and we had an open-room policy where any time Mom and Dad wanted to see the baby while Mom was still a patient, all she had to do was let us know and we would go and get the baby for her so she could hold him/her, touch him/her, or just spend time with the baby in the room.  When we would go get the baby, we would put clothing and a blanket on him or her.  These items of clothing were given to the parents upon discharge so they had a point of contact for themselves and the baby.  If you have an outfit you would like the baby to wear so you can take it home with you for a memory book or box, try to remember to bring it with you.  This can be accommodated.  You can have a locket of the hair. 

 

Remember more than anything that this is a loss, and that you will grieve, and that it is a perfectly normal thing for you to cry for what seems like no reason at all for weeks or even months.  Moms and Dads put so much into growing a baby; it's a tremendous loss and a shock to your system.  This isn't how it's supposed to be.  You're supposed to have a baby in your arms, holding them and watching them grow, and you've been denied that opportunity.  Please take advantage of support groups, whether online or in your area.  It helps you remember that you have peers who are also suffering and that helps validate what you are feeling.

 

Encourage family members to hold the baby, touch him or her, and express how they're feeling.  They, too, were anticipating a healthy baby.  Remember that you have people to lean on.  Use that when you're exhausted and need a break or when you need a hug. 

 

You are in my prayers, as is your family.  This should be a joyous time, not a time of grieving.  It's not fair, and it's okay to think that. Know also that with time the pain will lessen, though it will never go away.  Gather what memories you can, treasure them, and draw strength from each other.

 

post #11 of 12

I am so very sorry.

post #12 of 12

Oh, rhombus....  I don't have the words to express how saddened and sorry I am for you and your family... mecry.gif

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