# anencephaly



## hpienkos (Sep 3, 2005)

We discovered at 20 weeks about two weeks ago that our baby boy has this birth defect. We have had hard weeks to do the right decision for me and my family and we have decided to induce our baby, Elijah this week. Does anyone have any suggestions, or know of any procedures I should avoid or anything else I should keep in mind? I know a lot of this hospital visit/procedure will be very medical and I am trying to see if there is anything I should be aware of or any other healthier options out there that I should be aware of.

Thanks so much....


----------



## blessed (Jan 28, 2006)

Oh honey, I'm so sorry.

Have you thought about organ donation? So many babies can benefit. Just a thought, if it seems right for you and dh.

So sad for your loss.


----------



## egoldber (Nov 18, 2002)

I have friend whose little boy was diagnosed with this several years ago. Last year, when I lost my own child, she told me how the fact that she did not ask to keep the blanket they wrapped him in haunted her to this day.

Keep any physical keepsakes and memories you can. Cherish the time you have with him.

I'm so sorry.


----------



## isaiahsmommy05 (Jul 1, 2005)

I agree with what pp said. Get as many pictures and physical mementos as you can. Don't be afraid to ask to spend as much time with him as possible either.

I am so very sorry


----------



## UrbanEarthMom (Jul 20, 2004)

What a terrible tragedy - I am so sorry.


----------



## coleslaw (Nov 11, 2002)

I am so very sorry. Some ideas for you... Give him a name. Think about cremation vs. burial. Get lots of pictures, especially one of his face. Hold him, examine every little nook and cranny. Bring a molding kit to get of his hands and feet and get stamps of them. A lock of hair, if possible. Take everything that touched him, even if stained. If any family can be there to see him, it will mean a lot later, if not at the time.

My heart goes out to you. Your journey will be hard, but there are (too) many of us here who have lost their little ones to help you through it.


----------



## iris0110 (Aug 26, 2003)

You have gotten such great advice. I am soooo sorry you are having to go through this and make these decisions. My daughter was stillborn at 22 weeks and there are many things that I wish we would have known to do. Here are some things we did, and some things I wish we would have done.

Take lots of pictures. There is even a group that will come and do a profesional photo shoot for you

Hold him, for as long as you would like

Sing to him, and talk to him

Take a lock of hair, handprints and foot prints

Bathe and dress him (bring along a tiny outfit, or ask the hospital, many have preemie outfits for just this reason)

If you can bring one of the keepsake hand casting kits and get hand and foot casts

Ask the hospital to keep everything that touched him, blankets, hats, and clothes.

Ask the nurses for warm blankets to wrap him in.

You can ask to have him brought back to you as many times as you want while you are still in the hospital. This may be something you want to do, but I want to warn you that he will not look the same as time passes, so you may want to remember him as he was at birth instead of later. If you choose to have him brought in, ask the nurses to wrap him in warm blankets and put him in the warmer first.

There are funeral homes that offer free services to parents of babies who have died under 1yr of age. Most hospitals have a list of them, but you can also find them on line.

Ask for any greif booklets they may have.

Ask about a support group.

Some hospitals will offer you the twilight sleep drugs or other knock out drugs. Don't take them unless you want to be out when your baby is born. If you can you may also want to avoid the epidural. Sometimes it helps to be able to get up move around and rock your baby. You won't be able to do these things if you are woozy from medications, but do what you have to do to get through labor.








I am just so very sorry.


----------



## Naughty Dingo (May 23, 2004)

Oh Mama, I am so sorry this is happening to you and your sweet son.

A kind of mundane thing. In the hospital, they don't have nice soaps for when you shower. You may want to bring a nice smelling shower gel that you love for if/when you take a shower. Also it will be nice to have comfortable clothes that you also love to wear so that after he is born you can be as physically comfortable as possible. This stuff is probably the last thing on your mind right now, but it may make you feel physically a bit better in the hospital.

I will be thinking of you Mama and sending you strength and love.

ND


----------



## runes (Aug 5, 2004)




----------



## pianojazzgirl (Apr 6, 2006)

I'm so sorry


----------



## goosysmom (May 28, 2005)

Quote:


Originally Posted by *iris0110*
You have gotten such great advice. I am soooo sorry you are having to go through this and make these decisions. My daughter was stillborn at 22 weeks and there are many things that I wish we would have known to do. Here are some things we did, and some things I wish we would have done.

Take lots of pictures. There is even a group that will come and do a profesional photo shoot for you

Hold him, for as long as you would like

Sing to him, and talk to him

Take a lock of hair, handprints and foot prints

Bathe and dress him (bring along a tiny outfit, or ask the hospital, many have preemie outfits for just this reason)

If you can bring one of the keepsake hand casting kits and get hand and foot casts

Ask the hospital to keep everything that touched him, blankets, hats, and clothes.

Ask the nurses for warm blankets to wrap him in.

You can ask to have him brought back to you as many times as you want while you are still in the hospital. This may be something you want to do, but I want to warn you that he will not look the same as time passes, so you may want to remember him as he was at birth instead of later. If you choose to have him brought in, ask the nurses to wrap him in warm blankets and put him in the warmer first.

There are funeral homes that offer free services to parents of babies who have died under 1yr of age. Most hospitals have a list of them, but you can also find them on line.

Ask for any greif booklets they may have.

Ask about a support group.

Some hospitals will offer you the twilight sleep drugs or other knock out drugs. Don't take them unless you want to be out when your baby is born. If you can you may also want to avoid the epidural. Sometimes it helps to be able to get up move around and rock your baby. You won't be able to do these things if you are woozy from medications, but do what you have to do to get through labor.








I am just so very sorry.


Hugs mama...

My cousin went through this a few years ago.....so my heart goes out to you...

She did everything that Shannon and Coleslaw wrote....Someone crocheted her a super soft cap for her daughter and the pictures were taken in that and are very much treasured.

She chose to spend as much time as possible after birth and the hours following rather than asking for her many times.......she wanted to remember her at birth.....

She treasures the memories of the first bath and the molds of the tiny hands and feet (my local joann store had them for $5 in their clearence section) and she made a casting of her behind (like a belly cast)....that hangs in her bedroom and the rest are in a beautiful keepsake box a friend made for her...

My thoughts are with you and your family mama.....


----------



## BethanyB (Nov 12, 2005)

I agree with everything that everyone mentioned above. We knew that our son would not be coming home from the hospital also. Pictures, mementos, all of those things are _so_ important. Luckily, I didn't have a c/s or any knock out drugs, but I was still pretty out of it when Quinn was born. There just isn't a way to really prepare for what you are going to go through. The hospital will probably have a social worker and/or a grief counselor for you there. Take advantage of being able to talk to them. I am thinking of you during this aweful time, and I am so sorry...


----------



## hpienkos (Sep 3, 2005)

Thank you for all the comfort you ladies have given me and all the wise words and ideas, I have already included them in my birth plan! I go in tomrorow night. I already emotionally and spiritually, but not physcially, of course it is the unknown, but I know my husband will be there and with God on my side, we will get through this.


----------



## Aura_Kitten (Aug 13, 2002)

oh mama.









:: hugs ::

i couldn't read this and not respond. if i were you i would probably be out of my head with grief; but if i may offer advice, it would be the same as what others here have suggested ~ take lots of pictures, give him a name, and remember his face.

((((( HUGS )))))


----------



## coleslaw (Nov 11, 2002)

I will be thinking of you tomorrow. Please come back if it helps to let us know how everything went and to share your birth story.


----------



## HoosierDiaperinMama (Sep 23, 2003)

Quote:


Originally Posted by *coleslaw*
I am so very sorry. Some ideas for you... Give him a name. Think about cremation vs. burial. Get lots of pictures, especially one of his face. Hold him, examine every little nook and cranny. Bring a molding kit to get of his hands and feet and get stamps of them. A lock of hair, if possible. Take everything that touched him, even if stained. If any family can be there to see him, it will mean a lot later, if not at the time.

My heart goes out to you. Your journey will be hard, but there are (too) many of us here who have lost their little ones to help you through it.

ITA w/Keri.

I'm so sorry you're having to go through this. Be gentle on yourself.







s


----------



## Finch (Mar 4, 2005)

Oh, I am so very very sorry.







The others give excellent advice. You will be in my prayers. God speed, Elijah.


----------



## Finch (Mar 4, 2005)

Just wanted to let you know I've been thinking of you and praying for you and your family, mama.


----------



## merpk (Dec 19, 2001)




----------



## RivieraMom (Jun 14, 2005)

Mama hpienkos,

Thinking of you and your family during this time. I am heartbroken for your loss. I lived the same experience in Jan and have an idea of the range of feelings you may be feeling. When you come up for air again know that there is a community of wise and compassionate women who have been there at aheartbreakingchoice.com Please feel free to PM me if you want.








sweet baby Elijah








s to you


----------



## eightyferrettoes (May 22, 2005)

Thinking of you!

I chose labor induction for my first, a baby with fatal genetic anomalies, at 21 weeks gestation. It was by far the hardest and most exhausting time of my life, and yet I had a sense of peace about letting her go that is still with me, nearly three years later.

Wishing you the best on your journey. Be kind to yourself and your partner; it's so hard for awhile.


----------

