Homebirth to baby with Anencephaly???????? - Mothering Forums
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#1 of 17 Old 03-18-2013, 06:49 PM - Thread Starter
 
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Hello all,

 

I am 38 + weeks pregnant and have been planning a homebirth from day one. At 36 weeks we decided to get an ultrasound( I was not planning on getting one) because I had high bp for weeks and I was measuring very low.. at this time we found out our baby has Anencephaly. I have been searching everywhere trying to figure out if anybody has had a homebirth or birth center birth in this case and what the outcome was. Will our baby be in any pain? Will she need pain meds that only the hospital can give? What do I need to prepare if we do decide to birth at home? I am very stressed because nobody has any answers.. my midwife doesn't know, she is trying to set up an appt. with a doctor to get some information.. but I am worried because I could start labor any day now. If any of you have any experience or advice about this, I would be so grateful. 

 

Thank you

Ruth

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#2 of 17 Old 03-18-2013, 07:22 PM
 
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Is it anencephaly that your baby has? I am sorry that you are in this position.
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#3 of 17 Old 03-18-2013, 07:54 PM
 
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I googled homebirth and anencephaly.
Do you know the severity? I found this http://www.anencephalie-info.org/e/report.php
This must be so confusing. Are you familiar with any local hospitals or know any obgyns? Have you tried calling a prenatal specialist. I will be thinking of you and your family.
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#4 of 17 Old 03-18-2013, 08:07 PM
 
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Oh, so sorry momma...

 

I guess it depends on what you are expecting as far as her care if she survives birth. Babies have survived and lived briefly, though rare. They may be able to offer her oxygen but you might have to fight for even that.

 

If you stay at home I am concerned about how your midwife would handle complications if she to be unable to descend or became stuck. Hopefully she has a plan in place for emergencies. 

 

If you google anencephaly blogs you will find some from families who have been through this who you might be able to reach out to for support.


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#5 of 17 Old 03-18-2013, 08:12 PM
 
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That is a good link eab. They mention the c-section option which is what I believe we would personally choose if faced with that. But it is not without risks to momma so I know it would be very difficult to decide.


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#6 of 17 Old 03-18-2013, 08:19 PM
 
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https://www.nowilaymedowntosleep.org/

 

Also do you know about Now I Lay MeDown to Sleep? They will do free professional photography for you. 


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#7 of 17 Old 03-18-2013, 10:01 PM
 
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just wanted to tell you that I am so sorry and I hope you find the answers you are looking for.  what a lucky baby to have a mama like you.

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#8 of 17 Old 03-18-2013, 10:11 PM
 
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I can offer no advice. I have done extensive research on anencephaly, all through college and as far back as my middle school years, and I have to say that my heart is completely and truly with you. Your baby knows the love you have for her, and loves you in return, as any baby loves their mother. I do not know your religious affliation, but in any case, I pray the Lord provides you with peace during your pregnancy, delivery, and the precious moments you spend with your real-life angel. There is no love on this earth any greater than the love between you and this baby. I am humbled to even have the opportunity to pray for you.
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#9 of 17 Old 03-19-2013, 02:20 AM
 
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Dear Ruth,

 

I'm so sorry about the diagnosis of your baby and the hardship and pain you are going through...

13 years ago, we had a daughter with anencephaly as well, you can read Anouk's story on my site (http://www.anencephaly.info/e/anouk.php). She was born at the hospital, but except the fact that we choose to have a medical induction at 40 weeks, pregnancy and birth went without any complication. Anouk was alive for 13 precious hours after birth.


Through the website I built after her death, I've been in touch with many other moms of babies with anencehaly. Homebirths are not common, but I can tell you that if at the hospital there is a 25% risk of stillbirth (see http://www.anencephaly.info/e/report.php), the 10 babies who were born at home I know of have all been born alive. I had a homebirth myself (for my 5th child) and think that the smooth way such births are managed are gentle on the heads of babies with anencephaly and this may protect them.

You can find a story of a homebirth here http://www.anencephaly.info/e/carmen.php and in our group on facebook https://www.facebook.com/groups/anencephaly.info/ there is a mom who is about to give birth to her baby with anencephaly at home (she's due any day from now). I'm sure she'd be more than willing to share her experience with you.

Babies with anencephaly are able to feel pain, but they are not in pain just because they have anencephaly. Most babies who survive birth are very peaceful, but few do have seizures. Usually, they are managed without medication, but you may want to check with your health care provider (I'm from Europe, so not familiar with your health system) to have some pain medication on  hand for your peace of mind.

Is this your first baby? Births of babies with anencephaly tend to be very much alike previous births, but sometimes it takes more time.

 

Feel free to contact me through my daughter's page, I'd be more than happy to answer more questions.

With caring,

 

Monika

www.anencephaly.info

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#10 of 17 Old 03-19-2013, 04:57 AM
 
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I'm so sorry that you're going through this. I birthed my son with anencephaly in August. We were going through a birth center at the time. I was 14 weeks at diagnosis, though. We went back an forth and birth center versus hospital. Legal homebirths are nearly impossible in Maryland. We ended up going with the hospital for a variety of reasons but there was no particular reason why a birth center birth wouldn't have worked as well. They were prepared in either case. You'll need to involve hospice so that everything is planned ahead of time. The only medicine we used were eye drops because he was unable to blink. Oh and he did receive blow by oxygen. His breathing was really labored and stressed. He lived for 3.5 hours.

One reason we chose the hospital was because I wanted to spend as much time with him as possible and I was afraid that, say, he only lived for 15 minutes, I would still have to leave the birth center after a few hours and that would be it. They may not let me leave with him. That might not be the case where you live though. Oh, ask if you can transport him to the funeral home (if you want to). You'll probably be required to have a special paperwork. We brought him home alive and took him to the funeral home the next morning. He died as we were going home.

Please feel free to contact me if you have any specific questions or want to talk.

Stephanie
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#11 of 17 Old 03-20-2013, 08:25 AM - Thread Starter
 
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Quote:
Originally Posted by eabbmom View Post

I googled homebirth and anencephaly.
Do you know the severity? I found this http://www.anencephalie-info.org/e/report.php
This must be so confusing. Are you familiar with any local hospitals or know any obgyns? Have you tried calling a prenatal specialist. I will be thinking of you and your family.

We do not know the severity, my midwife suggests we go in for another ultrasound to take a closer look at our babys head to see if we can gain any insight about this. She said if we have a specialist with us, he may be able to give us further advice of what to expect when she is born. My midwife is currently trying to find someone, a prenatal doctor, ect. to talk with about this

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#12 of 17 Old 03-20-2013, 09:00 AM - Thread Starter
 
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Originally Posted by anouksmom View Post

Dear Ruth,

 

I'm so sorry about the diagnosis of your baby and the hardship and pain you are going through...

13 years ago, we had a daughter with anencephaly as well, you can read Anouk's story on my site (http://www.anencephaly.info/e/anouk.php). She was born at the hospital, but except the fact that we choose to have a medical induction at 40 weeks, pregnancy and birth went without any complication. Anouk was alive for 13 precious hours after birth.


Through the website I built after her death, I've been in touch with many other moms of babies with anencehaly. Homebirths are not common, but I can tell you that if at the hospital there is a 25% risk of stillbirth (see http://www.anencephaly.info/e/report.php), the 10 babies who were born at home I know of have all been born alive. I had a homebirth myself (for my 5th child) and think that the smooth way such births are managed are gentle on the heads of babies with anencephaly and this may protect them.

You can find a story of a homebirth here http://www.anencephaly.info/e/carmen.php and in our group on facebook https://www.facebook.com/groups/anencephaly.info/ there is a mom who is about to give birth to her baby with anencephaly at home (she's due any day from now). I'm sure she'd be more than willing to share her experience with you.

Babies with anencephaly are able to feel pain, but they are not in pain just because they have anencephaly. Most babies who survive birth are very peaceful, but few do have seizures. Usually, they are managed without medication, but you may want to check with your health care provider (I'm from Europe, so not familiar with your health system) to have some pain medication on  hand for your peace of mind.

Is this your first baby? Births of babies with anencephaly tend to be very much alike previous births, but sometimes it takes more time.

 

Feel free to contact me through my daughter's page, I'd be more than happy to answer more questions.

With caring,

 

Monika

www.anencephaly.info

Monika, thank you for your reply and for your precious little ones story.. I just realized that it is you that I wrote to on facebook this morning and it is your group that I added.. I just put the two and two together. Thank you for letting me know that our baby will not feel any pain just because of her condition. I was so worried about this. I will look into getting pain meds to relieve my worry though. This is our second child and with our first I birthed him at home and I was only in labor with him for 6 hrs. before he was born... I read that usually the birth is pretty much like a normal delivery, and I am not as concerned about this. Our baby is breech right now and my midwife thinks that is a good thing, so that I am not putting very much pressure on her head. Do you know what we should have on hand to cover her head with? some sort of gauze or anything? 

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#13 of 17 Old 03-20-2013, 09:07 AM - Thread Starter
 
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Originally Posted by Steve's Wife View Post

I'm so sorry that you're going through this. I birthed my son with anencephaly in August. We were going through a birth center at the time. I was 14 weeks at diagnosis, though. We went back an forth and birth center versus hospital. Legal homebirths are nearly impossible in Maryland. We ended up going with the hospital for a variety of reasons but there was no particular reason why a birth center birth wouldn't have worked as well. They were prepared in either case. You'll need to involve hospice so that everything is planned ahead of time. The only medicine we used were eye drops because he was unable to blink. Oh and he did receive blow by oxygen. His breathing was really labored and stressed. He lived for 3.5 hours.

One reason we chose the hospital was because I wanted to spend as much time with him as possible and I was afraid that, say, he only lived for 15 minutes, I would still have to leave the birth center after a few hours and that would be it. They may not let me leave with him. That might not be the case where you live though. Oh, ask if you can transport him to the funeral home (if you want to). You'll probably be required to have a special paperwork. We brought him home alive and took him to the funeral home the next morning. He died as we were going home.

Please feel free to contact me if you have any specific questions or want to talk.

Stephanie

Thank you Stephanie... 

As of right now, we are thinking of doing a birth center birth because it is mins from the hospital (our home is about 20 mins away from the closest hospital). Our midwife runs the birthing center and she also does home births. In our South Carolina we are able to bring our baby home with us either way. Also, our midwife said we can stay at the center for days if we need to. Also a local organization is helping us out with getting hospice care ready if we need it. Our midwife is a wonderful person but this is her first time having a client giving birth to a baby with anencephaly, so this is all new to her. We are trying to figure everything out together, and we don't have much time left. She had some concerns about being medically prepared in case our daughter needs something she doesn't have. She has oxygen and basic things to help a baby, but I think she is worried she might need something more extensive. Hopefully we will get to talk with a prenatal specialist before I go into labor. 

Thank you again.

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#14 of 17 Old 03-20-2013, 09:08 AM - Thread Starter
 
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And I just want to thank all of your for your support and kinds words, it means a lot right now. 

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#15 of 17 Old 03-21-2013, 04:00 AM
 
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I have never birthed a baby with anencephaly, I am only familiar with the condition through the internet.  But I did want to let you know I am praying for you and your sweet little one and will continue to do so.


-Meagan

 

A Christian, crunchy, homeschooling southern wife to D and mama to A (5) who loves ( treehugger.gif, knit.gif,teapot2.GIF, and reading.gif)

 

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#16 of 17 Old 03-21-2013, 01:00 PM
 
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Ruth, I can send you more information about how to take care of the opening of your daughter's head per e-mail. I've copied together advice from other parents whose babies did live for several days, but would rather not share it here as it's quite long. Send me a message to webmaster@anencephalie-info.org and I'll send it back.

 

Just to make it short, it's best to use non sticking gauze, the kind of stuff that is used for a burn. Some have had good results with vaseline as well, that should be easy to buy.

 

We didn't use anything at all though as it was rather clear after birth that it was just a question of hours before our daughter would die. As she didn't like when we touched the top of her head, I didn't want to hurt her "for nothing". 

 

Warmly,

 

Monika

http://www.anencephaly.info
 

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#17 of 17 Old 03-21-2013, 03:07 PM
 
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Originally Posted by incandescently View Post

Monika, thank you for your reply and for your precious little ones story.. I just realized that it is you that I wrote to on facebook this morning and it is your group that I added.. I just put the two and two together. Thank you for letting me know that our baby will not feel any pain just because of her condition. I was so worried about this. I will look into getting pain meds to relieve my worry though. This is our second child and with our first I birthed him at home and I was only in labor with him for 6 hrs. before he was born... I read that usually the birth is pretty much like a normal delivery, and I am not as concerned about this. Our baby is breech right now and my midwife thinks that is a good thing, so that I am not putting very much pressure on her head. Do you know what we should have on hand to cover her head with? some sort of gauze or anything? 


Hello there Mama,

First I just want to say my heart is full towards you and your family. You will be in my prayers, sincerely.

I read through the website and some people suggested 'micro preemie' hats were the best.

You are a courageous woman and I have much respect and love towards you and what you are about to accomplish. Your love is precious to that baby...May you be blessed.

 

 

Monika - I read Anouk's and your journey. May our heavenly father bless you always....Thank you for the websites.


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