Friend expecting baby that may not live after birth

[misskitty100]

I have a friend that is "due" in June and the baby has Down Syndrome and severe heart problems. Best case scenario is that the baby may live a couple of months and worse case is a couple of days....so far my friend and her husband are doing amazingly well.

I am wondering if anyone has any input on what I could do once the baby is born? Would some sort of rememberance gift be appropriate? Maybe a frame to put a picture of the baby in? I thought of a plant that they could put in the yard too. What about a bracelet with a charm that has the name and birth date of this little baby along with her first born (a beautiful healthy little girl)?

Any and all suggestions of how I could help under these very sad circumstances would be much appreciated.

[Lillith]

Reading your post gave me goose bumps. Last year, a teacher in the school where I work had a Down Syndrome baby boy, born w/heart defects. Most Down Syndrome babies have some sort of heart defect but many have successful surgeries to repair the damage. They waited for 6 months until the baby was strong enough to withstand the surgery w/high expectations for a good outcome. Sadly, the baby died. We were all devestated by the news. The only advice I could give you is to by all means, honor the baby's birth with a gift. I think the choice of a picture frame is excellent.

[clairea]

I would definitely honor the baby's birth. I know one of the hospitals here has a perinatal loss center, and many parents appreciate donations made to that center in honor of these short but precious lives. A plant or tree is also a good idea. Also, anything you can do to help the parents in the weeks and months after the birth will be much appreciated (meals, household help, etc.). Besides dealing with their grief, the mother will still be recovering from pregnancy and childbirth with all the accompanying physical and emotional challenges.

Your friends will be in my thoughts.

Claire

[Cookin4Love]

Absolutely recognize and honor the child's life--even inside the womb--and birth. Parents who lose children during or soon after pregnancy are often met with judgments from others because they grieve. Many of these parents crave the affirmation that their child is a real, meaningful life.

My daughter experienced a miscarriage about a year ago, and has found tremendous support from the MISS foundation (http://www.missfoundation.org) . You might want to check out their discussion forums to get a sense of the kinds of things that have been helpful to others who have experienced loss. It might also be a good resource for your friend. One of the forums is specifically for parents who have suffered a fatal diagnosis in the perinatal period.

Thank you for being sensitive to your friend's needs in this difficult time. The person who stands by one during loss is one who will never be forgotten.

[oceanjasper]

That is really sad. I agree that it is important to celebrate the birth and life (regardless of how long it may be) of your friend's baby. I like the idea of the plant or tree, something that will live and grow long after the baby is gone.

I have a friend who lost her baby girl twins only a couple of days before they were due to be born. It was a devastating time for her and her husband. They had a funeral for the girls and all of her friends attended. It was the saddest funeral I have ever been to, but it was so important to her that we were there.

Your friend is very blessed that you want to be there for her during this difficult time.

[DebGo]

my heart goes out to your friends. my girlfriend who lost her child was given a rose bush in his honor. i have heard this done by others as well. she really appreciates when it blooms and it is a beautiful reminder of his short life.
debbie

[jmarie]

Like others have said, I think it is wonderful for you to be considering their feelings and what they are going through right now...They waited 9 months for this little darling to arrive and still have their hopes and dreams for this child. Your gift, because it was so thoughtfully chose, will mean more to them than you will ever know.

I really like the idea of the rose bush.

Some say love it is a river
that drowns the tender reed
Some say love it is a razer
that leaves your soul to blead

Some say love it is a hunger
an endless aching need
I say love it is a flower
and you it's only seed

It's the heart afraid of breaking
that never learns to dance
It's the dream afraid of wakingthat never takes the chance
It's the one who won't be taken
who cannot seem to give
and the soul afraid of dyingthat never learns to live

When the night has been too lonely
and the road has been too long
and you think that love is only
for the lucky and the strong
Just remember in the winterfar beneath the bitter snows
lies the seed
that with the sun's love
in the spring
becomes the rose

Joyce

[Chefzhat]

How sad. Defniately honor the birth. Picture frames or charms or a plant or tree are great ideas.

You might also want to remember them at the one-year anniversary with a card or something. And be sure to be available to talk, grieve, etc with them.

Debie

[jjsooner73]

Originally posted by Chefzhat
You might also want to remember them at the one-year anniversary with a card or something.

And 2 year, and 3 year, ...
I have friends who lost their littly boy 4 years ago and I know this year was harder than last. THey have since had a beautiful healthy girl, but they still miss what they didn't have with him. I know she takes comfort in knowing people are thinking about them at the anniversary of his birth and death (he did live for 12 days).

You've received some good advice on this thread; your friend is lucky to have you!

[donnamp14]

Misskitty- You are a good friend.
-Donna

[rosie_one]

Unfortunately, I've become all too good at giving this gift. Several of my friends have had stillbirths or late miscarriages over the past few years.

Immediately after each one I've purchased a simple, but beautiful votive candle holder and candle and sent it with a note of support to the grieving parents. My hope is that when they need to remember, like on the child's due date each year, they will light the candle and take some time to think about their loss together.

Such a sad thing... I hope things go peacefully for them.

[Jessica]

Your friend is lucky to have you in her life.

I think a picture frame is a beautiful idea. Also, be there to talk about their baby. Many of the women in my support group lost children to stillbirth and neonatal death and they say the hardest thing is that they want to share their precious few memories and no one seems to want to listen.

A person on one of my other BBs posted this letter to friends and relatives of someone who has lost a baby through miscarriage, stillbirth or neonatal death. I am copying it here in hopes that something may help.

What we wish you knew about pregnancy loss:
A letter from women to their friends and family

by Elizabeth Soutter Schwarzer
I assert no copyright for the material. Please use it as you see fit to help women who have endured this terrible grief. Thank you.



Date: Sat, 23 Mar 2002

When women experience the loss of a child, one of the first things they discover they have in common is a list of things they wish no one had ever said to them. The lists tend to be remarkably similar.

The comments are rarely malicious - just misguided attempts to soothe.

This list was compiled as a way of helping other people understand pregnancy loss. While generated by mothers for mothers, it may also apply similarly to the fathers who have endured this loss.

When trying to help a woman who has lost a baby, the best rule of thumb is a matter of manners: don't offer your personal opinion of her life, her choices, her prospects for children. No woman is looking to poll her acquaintances for their opinions on why it happened or how she should cope.

-Don't say, "It's God's Will." Even if we are members of the same congregation, unless you are a cleric and I am seeking your spiritual counseling, please don't presume to tell me what God wants for me. Besides, many terrible things are God's Will, that doesn't make them less terrible.

-Don't say, "It was for the best - there was probably something wrong with your baby." The fact that something was wrong with the baby is what is making me so sad. My poor baby never had a chance. Please don't try to comfort me by pointing that out.

-Don't say, "You can always have another one." This baby was never disposable. If had been given the choice between loosing this child or stabbing my eye out with a fork, I would have said, "Where's the fork?" I would have died for this baby, just as you would die for your children.

-Don't say, "Be grateful for the children you have." If your mother died in a terrible wreck and you grieved, would that make you less grateful to have your father?

-Don't say, "Thank God you lost the baby before you really loved it." I loved my son or daughter. Whether I lost the baby after two weeks of pregnancy or just after birth, I loved him or her.

-Don't say, "Isn't it time you got over this and moved on?" It's not something I enjoy, being grief-stricken. I wish it had never happened. But it did and it's a part of me forever. The grief will ease on its own timeline, not mine - or yours.

-Don't say, "Now you have an angel watching over you." I didn't want her to be my angel. I wanted her to bury me in my old age.

-Don't say, "I understand how you feel." Unless you've lost a child, you really don't understand how I feel. And even if you have lost a child, everyone experiences grief differently.

-Don't tell me horror stories of your neighbor or cousin or mother who had it worse. The last thing I need to hear right now is that it is possible to have this happen six times, or that I could carry until two days before my due-date and labor 20 hours for a dead baby. These stories frighten and horrify me and leave me up at night weeping in despair. Even if they have a happy ending, do not share these stories with me.

-Don't pretend it didn't happen and don't change the subject when I bring it up. If I say, "Before the baby died..." or "when I was pregnant..." don't get scared. If I'm talking about it, it means I want to. Let me. Pretending it didn't happen will only make me feel utterly alone.

- Don't say, "It's not your fault." It may not have been my fault, but it was my responsibility and I failed. The fact that I never stood a chance of succeeding only makes me feel worse. This tiny little being depended upon me to bring him safely into the world and I couldn't do it. I was supposed to care for him for a lifetime, but I couldn't even give him a childhood. I am so angry at my body you just can't imagine.

-Don't say, "Well, you weren't too sure about this baby, anyway." I already feel so guilty about ever having complained about morning sickness, or a child I wasn't prepared for, or another mouth to feed that we couldn't afford. I already fear that this baby died because I didn't take the vitamins, or drank too much coffee, or had alcohol in the first few weeks when I didn't know I was pregnant. I hate myself for any minute that I had reservations about this baby. Being unsure of my pregnancy isn't the same as wanting my child to die - I never would have chosen for this to happen.

-Do say, "I am so sorry." That's enough. You don't need to be eloquent. Say it and mean it and it will matter.

-Do say, "You're going to be wonderful parents some day," or "You're wonderful parents and that baby was lucky to have you." We both need to hear that.

-Do say, "I have lighted a candle for your baby," or "I have said a prayer for your baby." Do send flowers or a kind note - every one I receive makes me feel as though my baby was loved. Don't resent it if I don't respond. Don't call more than once and don't be angry if the machine is on and I don't return your call. If we're close friends and I am not responding to your attempts to help me, please don't resent that, either. Help me by not needing anything from me for a while.

[Jessica]

Here is another one.

THE WISH LIST

1. I wish you would not be afraid to mention my baby. The truth is just because you never see my baby doesn't mean he or she doesn't deserve your recognition.

2. I wish that if we did talk about my baby and I cried you didn't think it was because you have hurt me by mentioning my baby. The truth is I need to cry and talk about my baby with you. Crying and emotional outbursts help me heal.

3. I wish that you could talk about my baby more than once. The truth is if you do, it reassures me that you haven't forgotten and that you do care and understand.

4. I wish you wouldn't think that I don't want to talk about my baby. The truth is I love my baby and need to talk about him or her.

5. I wish you could tell me that you are sorry my baby has died and that you are thinking of me. The truth is that it tells me you care.

6. I wish you wouldn't think what has happened is one big bad memory for me. The truth is the memory of my baby, the love I feel for my baby, the dreams I had and the memories I have created for my baby are all loving memories. Yes there are bad memories too but please understand that it's not all like that.

7. I wish you wouldn't pretend that my baby never existed. The truth is we both know I had a baby growing inside me.

8. I wish you wouldn't judge me because I am not acting the way you think I should be. The truth is grief is a very personal thing and we are all different people who deal with things differently.

9. I wish you wouldn't think if I have a good day I'm "over it" or if I have a bad day I am being unreasonable because you think I should be over it. The truth is there is no "normal" way for me to act.

10. I wish you wouldn't stay away from me. The truth is loosing my baby doesn't mean I'm contagious. By staying away you make me feel isolated, confused and like it is my fault.

11. I wish you wouldn't expect my grief to be "over and done with" in a few weeks, months, or years for that matter. The truth is it may get easier with time but I will never be "over" this.

12. I wish you wouldn't think that my baby wasn't really a baby and it was blood and tissue or a fetus. The truth is my baby was a human life. My baby had a soul, heart, body, legs, arms and a face. I have seen my baby's body and face. My baby was a real person.

13. My baby’s due date, Mothers Day, celebration times, the day my baby died and the day I lost my baby are all important and sad days for me. The truth is I wish you could tell me by words or by letter you are thinking of me on these days.

14. I wish you understood that losing my baby has changed me. The truth is I am not the same person I was before and will never be that person again. If you keep waiting for me to get back to "normal" you will stay frustrated. I am a new person with new thoughts, dreams, beliefs, and values. Please try to get to know the real me-maybe you'll still like me.

15. I wish you wouldn't tell me I could have another baby. The truth is I want the baby I lost and no other baby can replace this baby. Babies aren't interchangeable. Besides, you do not know whether we have fertility problems too.

16. I wish you wouldn't feel awkward or uncomfortable talking about my baby or being near me. When you do, I can see it. The truth is it's not fair to make me feel uncomfortable just because you are.

17. I wish you wouldn't think that you'll keep away because all my friends and family will be there for me. The truth is, everyone thinks the same thing and I am often left with no one.

18. I wish you would understand that being around pregnant women is uncomfortable for me. The truth is I feel jealous.

19. I wish you wouldn't say that it's natures way of telling me something was wrong with my baby. The truth is my baby was perfect to me no matter what you think nature is saying.

20. I wish you would understand what you are really saying when you say "next time things will be okay". The truth is how do you know? What will you say if it happens to me again?

[rburganmckinley]

Jessica, thanks for posting those. They say it perfectly, absolutely perfectly.

MissKitty,

I know that a picture frame would have been a horribly painful reminder for me. I would not have appreciated that and actually found it to be insensitive. But your friend may appreciate it.

The candle or plant idea seems better fit to me. I planted an apple tree in rememberence of the miscarriage I had.

Whatever you do though, will be better than nothing at all. You sound like a great friend, wanting to do something to recognize their loss. I had one (good) friend who didn't recognize that it ever happened and didn't even try to contact me for a couple months afterwards. Needless to say we are no longer friends.

[Jessica]

rburgan--you make a good point. My experience has been with women who wanted to have pictures around them, but other women might see the frame as a painful reminder.

Flowers or candles are safer. Also, you are right in saying that just about any gesture in good faith is better than nothing, even saying you are sorry but you don't know what else to do.

[eas11]

You might also consider adding to a candle or flowers a donation in the baby's name to the National Down Syndrome Congress (http://www.ndsccenter.org/) or a local chapter if there is one.

This is sad news. I know dozens of people with Down Syndrome, several who were born with severe, but repairable, heart defects. It is awful that the testing has revealed that this defect is not repairable.

The Congress operates a wonderful parent-to-parent support program. I hope your friends Dr's have provided them with the info.

[Lillith]

Jessica, your posts were extremely helpful, poignant, and thought provoking. Thank you.

[ChristieinMB]

This subject touched me, my BIL has Down Syndrome. He of course, is alive, so I didn't have any advice, but an old friend said she planted a tree when she lost a child and enjoyed watching it grow over the years. It brought her sweet memories. I don't know about your friends housing arrangement so that may not work.
Jessica posted the best advice.
Christie

[Jessica]

I am glad people found my posts helpful.

Just to clarify, I did not write either of those pieces. I found them on another BB.

MissKitty--Your friends have my prayers, and they are lucky to have someone like you in their lives.