# No loss yet, but it's inevitable. Now what?



## VTmamadownsouth (Nov 26, 2008)

I'm 12 weeks pregnant with a baby who has severe exencephaly. There's no back portion of the baby's skull, and nearly all the brain tissue is outside of the skull. We were told this is "incompatible with life." It sounds as though we have 3 options. D&C now, induction in 4 more weeks, or deliver full term, probably stillbirth, possibly a child who lives up to an hour.

I have a prolapsed uterus, SPD and became really depleated after DS's birth, so I'm concerned what waiting to term will do to my reproductive and overall health.

I dread a D&C because I just think my body needs to go through something that at least resembles birth to be able to get a grip on what's happening.

A medical induction wouldn't happen for 4 more weeks according to the specialists we talked to because they say any less than that and it will be less effective. Not sure how true this is, but they're the one's with the drugs to make it happen.

I looked into an herbal induction, but from what I read this late makes it difficult, and it's risky. There's a midwife who will attend me, but she is not in favor of it. My accupuncturist won't work on the induction points either.

What I want is a normal, healthy birth at home to a normal, healthy baby. That's not going to happen for me this time, so my next choice would be a natural miscarriage at home. The doctors say these babies (somehow) tend not to die on their own before term, that birth itself, or just being outside of my body will be why she dies. So apparently my chances of having a miscarriage aren't very good.

I HATE having to make this decision. I just don't want to. I don't even want to know what other's would do because I absolutely do NOT want to get into a moral debate about ending a pregnancy.

I just want to know, if you're willing/able to share, what you did when you knew your baby would die, and carrying to term was not a good option for you. Please feel free to PM me.


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## MountainMamaGC (Jun 23, 2008)

I am so sorry you have to make a choice like this. I hope the answer comes to you, and that you are able to make peace with whatever you decide. As far as the induction goes; are you going to be ok with seeing the baby? My instinct would be to get the D&C. I dont know if I would be strong enough to see my baby like that.

Again, I am sorry. 

HUGS.


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## VTmamadownsouth (Nov 26, 2008)

It's a valid point. I don't want to, but I feel like the process as a whole will help me to heal. Thank you for your reply and support. They mean a lot.


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## Multimomma (Jan 25, 2008)

I'm so sorry.When i lost my baby, holding her made a big difference. She did not have any major issues, however. My sil, who lost her baby with some issues, did not hold her baby, although she did look a little at him. She now regrets it, as she wishes she had the time back and now obsesses over what she missed.

I wish you peace and grace, and healing.


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## Vermillion (Mar 12, 2005)

I'm so sorry... My heart breaks just imagining what you're going through right now.

I found out my little girl was gone at 17 weeks. They thought she had died around 15 weeks. I was warned that if I went with induction that the condition of the baby might not be so great since she had been gone for a bit, and was given the option of D&C. I was pretty terrified at the thought of seeing her, especially in a condition that might possibly be disturbing to me... I didn't want to see her, really... but I ended up going with the induction because I just felt like I needed to birth her. After the birth, I did choose to see her and spend time with her. It was incredibly healing for me. I cherish that time and have no regrets.

Not the same situation as yours, of course, but I wanted to share as I had some major reservations about seeing my baby and had to choose between a quick, get it over with d&c, or labor & birth and then seeing the baby. I truly feel that seeing my baby gave me some closure that I don't think I would have gotten otherwise... I think I would have wondered about her forever had I not seen her.

Of course what is right for one person may not be right for another, and it is SUCH a difficult and painful decision that I wish no woman would EVER to make.









Sending you so much peace and healing as you walk this path~ & know that you are not alone.


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## RoseRedHoofbeats (Feb 27, 2008)

I am so sorry. I have not been through this but one of my very close friends has.

She decided to carry to term. She felt like her baby was still alive and she wanted to give birth. She felt that she wanted to let the baby live as long as it could. Her baby ended up living about an hour after birth, and they had a special hat for the baby to wear, and they took pictures and she could hold her. They got to have a baby to bury and have a funeral for, which she found very validating- other people recognized the baby was alive and died.

I know that these are such painful choices to think about and I am so sorry you have to make this choice. I think it is entirely up to you and that any choice you make is a valid one, and no one has any room at all to judge you.

I would strongly recommend against an herbal induction, is the only thing. They're unpredictable at the best of times.

*hugs* if okay.

~Rose

ETA: This is a blog from a mom's whose baby was born with a severe encephalocele. He lived for 67 days. http://mnssams.blogspot.com/2008/06/newsletter-i-meant-to-post-weeks-ago.html

I thought that the pictures might help you. His face, his body, they look normal, he looks like a regular cute baby from the front. There are some pictures from after he was born here: http://mnssams.blogspot.com/2008/01/hes-with-us.html

Joshua was born while I was pregnant with my daughter and we thought she might have birth defects, and I found it very comforting and helpful. I hope it can bring you some peace or help you make this decision.


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## KristaDJ (May 30, 2009)

I am SO sorry (((((((((((((((HUGS)))))))))))))) The only thing I can say is that I personally would not do a D&C; I think seeing and holding the baby is a very important part of loss.


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## yellowbutterfly (Feb 26, 2008)

Your situation has me crying right now. I just want to say I'm so so sorry you are forced to make this agonizing choice. No parent should ever have to go through this. Please know that you have support here and I hope that whatever you decide to do that you will be at peace with your decision. Nobody would ever judge whatever choice you make and you shouldn't have to make a decision right away - you should be able to think about it as long as you need to. Again, I'm so so sorry.


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## lollie2357 (Feb 18, 2008)

What a difficult situation, I'm so sorry.

My baby died at 14 weeks, and I had a d&c. I wish that I could have seen him.


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## mistymama (Oct 12, 2004)

I'm so very sorry.

I had a baby boy born with Lissencephaly last September who lived for 10 weeks. It was just awful watching him suffer, and we did make the choice to make him comfortable and let him pass on .. they didn't not find the brain malformation at ultrasounds. There is something to be said for holding your baby, getting pictures and having those memories. But I will be honest .. I have thought long and hard about what I would do if I ever got pregnant again and they found the same brain malformation .. and I would have the D&C as early as possible. That is my personal choice on what I feel would be easiest for me ... it's just so painful to love and bond and feel that baby move inside you for all those weeks, experience labor, only to know that baby will not be with you for very long.

Goodness, I'm crying now. No one should have to make these choices and I am so very sorry you are in this position. I belong to a wonderful group on Facebook - it's a group of parents that have children (or angels) with any type of -cephaly ... if you would like to join and ask any of them questions, they are so wonderful and you may find someone who had a baby with the same condition as yours to give you more info. PM me your FB email if you want me to get you invited.

Again, I'm so sorry. I will keep you in my thoughts and prayers, and if you need anything, PM me.


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## RoseRedHoofbeats (Feb 27, 2008)

Hi- I just wanted to drop in and see how you were doing, and let you know we're all here for you.

~Rose


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## Milly_P (Aug 9, 2010)

Hi mama,

I'm from your ddc. Our son was stillborn last year after a cord accident 8 weeks before delivery. One of the very cruel and painful things for us in the hospital was that because he died before he was born, they would not recognize him as being alive. We could not get a birth certificate for him. It was so painful anyway, but when I asked about filling out his birth certificate it was just another stab in the heart because he had BEEN alive for almost 8 months inside of me. I know that with your baby's problem there is no promise that s/he will live outside the womb at all, and please know I would never judge a mother for the decision she made in this heartbreaking and unfair situation. I just know that if there had been a chance for me to see my son alive outside of me for even a second, I would have taken it, and I would have been grateful for the validation that he was a living child who deserved that recognition.


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## VTmamadownsouth (Nov 26, 2008)

Thanks for all the support and feedback.

I'm doing ok. Not awesome, but functioning.

We haven't scheduled the induction yet, but I think that's where we're leaning. I think I'm still avoiding the reality that I have to make this decision. I'm afraid of the whole process. I dream a lot about bleeding, and I wish I would just have a natural miscarriage. Strange thing to wish for.


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## RoseRedHoofbeats (Feb 27, 2008)

I'm glad to hear from you. I hope that having made a decision, or at least deciding which way to lean, has helped a little bit. At this point being able to function IS awesome.

I don't think that's a strange thing to wish for at all- you just wish you wouldn't have to do decide to end your pregnancy. I felt the same way when I found out at ten weeks my baby had no heartbeat. *hugs* some more.

~Rose


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## hildare (Jul 6, 2009)

i dd crashed to say how sorry i was in your ddc. this just breaks my heart for you.

i had to end an ectopic, (my first m/c of the 3 losses we've had) and while it's NOTHING compared to what's happening to you, i know that it's heartwrenching. you've shown such strength from the posts of yours i've read. i really do wish you peace. i also hope that you can make the best decision for your family and process your grief without guilt. the only control you really have over the circumstances seem like when, so how could anyone try to make you feel bad for that?


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## VTmamadownsouth (Nov 26, 2008)

Thanks all.

So, here's a question. If you have a baby at a hospital, either an early induction or a regular birth and the baby dies, what happens next? They don't just let you take your baby home, right? Do you have to get a funeral home involved and all that. That's what they're telling me, so I assume it's accurate. It just feels so strange. First to have a baby in a hospital, then to have to send him/her home with someone else or just leave her there if you can't afford funeral services.

Sorry for the morbid questions.


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## KristaDJ (May 30, 2009)

It depends on the babies age. I have heard of women getting to take their babies straight home after early losses but after the point of viability, when they require a death certificate, they are taken to a funeral home. It would also depend on the law about handling your own dead in your state. Some states allow the family to handle the dead while others require that an undertaker do everything.


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## Vermillion (Mar 12, 2005)

When I lost my little one, she stayed at the hospital for testing when we left, and then the funeral home took her for cremation. All the costs (cremation, the urn, even memorial jewelery for ashes) were taken care of by the hospital/and or funeral home, not exactly sure which one paid... I have heard that is the case in many other places as well. Definitely something to ask about, as a lot of places will take care of the costs of children under a certain age.


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## RoseRedHoofbeats (Feb 27, 2008)

Most places will do this sort of thing for free. The hospital social worker should be able to help you there. Ask to speak with them- they are an amazing resource. They can help set you up with a counselor to talk you through this, support groups for women who have had losses, and set up aftercare for once you go home.

I hope you get the support you and your family need. My heart is just breaking for you mama. *hugs*

~Rose


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## Milk8shake (Aug 6, 2009)

Here in Oz, if a baby is born before 20 weeks, then no death certificate or funeral/cremation/etc is required. Parents are allowed to take their child home, although there are obviously council laws about where you could potentially bury the baby. After 20 weeks, a birth/death certificate has to be issued, and a funeral home must be involved.

I would see if you could find out what the law is in your state, as I think some medical staff would "prefer" that funeral homes were involved regardless, even if it is not legally necessary.

The flip side to that is that many, many women get a heck of a lot of comfort out of getting a birth/death cert for their baby, because it is kind of like "proof" that they existed.

Most funeral homes will take care of a baby's arrangements free of charge, and yes, the hospital social work dept should be able to help you locate such a business.

Depending on which way you are leaning, it's certainly been known to occur that hospital staff might help "fudge" dates a little in order to help you go the outcome that would give you the most peace. Ie, they might say a 19 week babe is 20 weeks, in order for the child to be "officially" recognised.

I hope I understand your post correctly, it sounds as though you would be around the 18/19 weeks if/when they induce?

If I can make a suggestion, I would get in contact with your local SANDS (or maybe they call it SHARE in the US?) and see if you can get some advice. If you're not sure, the International Stillbirth Alliance should be able to point you to the relevant organisation.

They may be able to put you in touch with other parents who have made similar decisions, and that might give you some guidance. Also, our SANDS coordinator will often get involved in such situations as a parent advocate/liaison - something like that might be of real benefit to you at a time like this.

Finally, and yes, I realise you have enough to take in at the moment, and I'm writing an essay, but I'd encourage you to get in touch with a photography group. Perhaps someone here will know the name of one in the States, but this is the link to the Aussie one: http://www.heartfelt.org.au/

I hope I can put this tactfully, but they are experienced in photographing babies who have physical or visible medical conditions, and you can still come away with pictures that you'll treasure.

ETA: I googled the US one:

http://www.nowilaymedowntosleep.org/home/


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## theboysmama (Sep 21, 2005)

My situation was different than yours as I found out at 17wks my baby had died (he was probablyabout 14 wks gestation). A d&e was suggested to me but I decided to be induced with misoprostol (it is also called . My dr agreed to prescribe it to me as long as my midwife would be at the birth. My mw picked it up from the pharmacy and inserted it for me. I had a lovely private birth at home. We chose to bury our son so we made burial arrangements and drove here directly to the cemetery for the burial. We had a private burial with just family and avoided the funeral home all together. Nilmdts is an excellent origination. Many photographers won't do under 27 wks. You would just need to call and ask. I would recommend as many photos as possible, full body, face, individual hands and feet, hand and foot prints too. You don't ever have to look at them again but if you decide you want them you will have them. I am so sorry you are going through this, no one should have to make these decisions.


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## Milly_P (Aug 9, 2010)

Looks like you've gotten lots of great info already, and I don't have anything to offer outside my own experience, as far as what happens after the baby is born.After our son was born one of the nurses helped chose a funeral home for us, as we wanted to have his body cremated. I specifically wanted a funeral home where I could hand my son over to someone who would carry him, in his blanket, instead of putting his body in a box or container of some sort. That was very important to me. When the lady from the funeral home came into our hospital room, she brought a beautiful, thick, quilted blanket, made especially for situations like ours. She sat beside the bed while we wrapped him, with his hospital blanket and hat on, in the blanket. Then she stayed there, quiet, while we spent more time hugging him and crying, until we finally felt it was time. We handed him over to her and they cremated his body, blankets, hat and all, just like that. When we left the hospital we went straight to the funeral home and picked out a tiny urn. We went back 3 days later and picked it up.


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