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Coping with Neonatal Death
I lost a baby at 20 weeks a year ago and am having major fears about trying to have another child because the grief was so severe. I have been blessed with one healthy child, but the unexplained loss that I had has made trying to conceive again very stressful. Can anyone recommend a counselor - preferably in SF, but I would go anywhere to see the right person -- who has addressed these multiple issues? Thanks so much. Anon
Today I got the news that my younger brother and his wife were about to lose their preemie twin. He was born at 29 weeks after his twin died in utero and my sister-in-law went into premature labor. The live twin seemed ok for about a week, but then the doctors (down in LA at Children's Hospital, which is supposed to have the best neo-natal care in the country) discovered that his kidneys were in ruinous shape and that he may have brain damage and in any case, was unlikely to live. My brother and sister-in-law made the decision to unhook Baby Tak (Max Takeshi) and hold him until he passed. This was their second pregnancy. The first one ended early in miscarriage. David is 37 and Hiromi-chan is 32. This has been a devastating experience for the whole family. I, the eldest daughter, with two healthy kids of my own, don't know what to say or do. Can anyone on this list suggest a way I can help them through this, in any small way? Recommend a good book for dealing with grief of this kind? Point me to a website with wisdom and advice? I'm flailing here. And I want so badly to ease their pain, if only just a little. Thanks for any advice. Julie
I'm so sorry to read about your brother and his wife's loss of their preemie twins. The pain of birth/death is almost unbearable -- I lost my second son Thomas a few days after his birth, but eventually, through the grieving process, it is possible to come to a peaceful place. In this difficult time, being there for them in any way you can will be a tremendous help.
And here are a few useful books: ''When Hello Means Goodbye'' (available from Perintal Loss, 2116 N.E. 18th Ave, Portland, OR 97212) tel: (503) 284 7426
''Dear Cheyenne'' (available from Mothers in Sympathy and Support, 8448 W. Aster Dr, Peoria, AZ 85381) tel: 602 979 1000
''Sylvie's Life'' Marianne Rogoff 1995 (published Zenobia Press PO Box 5212 Berkeley, CA 94705
''Empty Cradle, Broken Heart -- Surviving the death of your baby'' Deborah Davis Ph.D. Fulcrum Publishing 1996
''I wish I could hold your hand'' -- a child's guide to grief and loss Dr. Pat Palmer Litle Imp Books
And there are groups called ''Compassionate Friends'' www.compassionatefriends.org
And here are a bunch of links that offer support: http://www.bornangels.com/links.htm
Sending warmth and compassion to you and your family, Katy
At that time several people shared that they had also lost babies during pregnancy, and those people who treated the event as a ''miscarriage'' rather than the loss of a child said that they hadn't allowed themselves to properly grieve. I don't know what you can do, but I do know that treating it as losing children rather than a pregnancy will help you avoid saying things that are unintentionally hurful (i.e. one would not comfort someone who had lost a child by saying that they could have more children.) I don't think that there is anything anyone can say or do to ease their pain. Only time can do that. But I'm sure that they will appreciate your loving support. --wishing you all comfort and peace
The grief of loosing a baby is beyond devastating. Some discribe it as a form of insanity and it was that way for me. At one point I latched on to the idea that if I'd only eaten more eggs during my pregnancy that none of it would have happened. Sounds crazy now, but I truely believed it at the time.
I also went through a period where I felt that I had subconciously killed my babies. That my body had rejected them and caused their deaths. The guilt was crushing. I considered suicide. The thought of it was seductive. The only thing that stopped me was the realization that with both my parents still alive, that I would be transferring all my pain onto them. They and my husband would go through even more grief.
I also realized that given my recreational drug use history, and my family's history of alcohol abuse, that I needed to go through the grief process straight and stone cold sober. I knew that if I began medicating my pain that I would spiral down into a hole that I would not be able to get out of.
Your brother and his wife may experience similar crisises. Since they lost their first pregnancy too, they could experience even more complicated grief.
As to what you can do, here's what I found helpful and not. I needed to talk and not hear placating responses, even though people were trying to be supportive. Sentences like, ''you'll get over it'', or ''you'll be able to try again'' or the worst ''they're with god now'' were horrible. To be supportive, say something like, ''I wish there was something that I could do to ease your pain''.
What was critically important for me was joining a neonatal loss support group. Many hospitals offer such programs. We also sent out an announcement card, to let everyone know that we suffered the loss. I dreaded the idea of bumping into people and having them exclaim happily, ''how are the babies?''.
There are some good books on the subject too. I think the one I liked was called, ''Surviving Neonatal Loss''. The best advise I received was this; do not make any life changing decision, like moving, changing careers, divorce, etc. for at least one year afterward.
The statistics on divorce after neonatal death are pretty grim. Everyone grieves differently, and grief is more likely to tear a marriage apart then bring it together. But if both parents realize this, then it can be something that they work to acitvely avoid.
Keep in contact with both your brother and sister in law. Call often, just to check in. If they live in the area, visit them. Allow them to spill their guts if they want to. Or not say so much either. Bring prepared dinners, like a big plate of lasagna, so they don't have to cook. Do laundry, clean the house, cut the grass. The minutia of everyday life is overwhelming when you're grieving. Don't wait to be asked. If you see dirty dishes, clean them.
Go for walks with them. With grief comes extreme lethargy. Getting the blood flowing is always a good idea.
If they have a nursery set up, volunteer to help them put things away when they feel ready. Some might want to get rid of everything right away, so they don't have to be reminded of the loss every time they look around. Others will need to hold onto what they have, because it's all they've got left.
My husband and I decided to make a memorial box, and in it we placed several special keepsakes for each baby, which we have to this day. I visited the box often in the months afterward.
We also had a small, private goodbye ceremony with just closest family members. We found a double Redwood tree and placed their ashes at the base of the tree and said our goodbyes. It was comforting for us to visit the tree on our hikes. We're not religious, so it helped with closure.
It's also important to keep the babies memories alive by acknowledging their births and their existence, albeit fleeting, in your family. Your brother and his wife are parents, they just don't have any living children. I hated when others defined me as not a parent/mother. I gave birth and then buried two children. That's parenting too.
And take care of yourself. Go to a support group if you feel it might help. Though not as devastating, you suffered a loss too. mother of Ava, Rachel, and Jason
After the baby died I called my sister everyday until she told me that she'd call me in a couple of days, I then knew that she was doing better. I'd listen to her mostly and let her talk about how she was feeling. Some days were unbearable for her and she'd just cry on the phone and I'd cry with her. We'd talk about the pregnancy, the birth, the hopes she had and also of course try and figure out what went wrong. I never visited her as she asked me not to, I live in Oakland and she lives in England. She also said that talking on the phone and having someone just listen to her was the greatest help she ever had through the rough times. Her husband however, didn't deal with his grief aswell and bottled it up for a few months, he felt that he should be strong for my sister as she was the one who carried the child and gave birth, he said he never felt like a father. Don't let your brother feel that way, make sure he knows that the child was just as much his, as his wifes. He was and always will be a dad. It tore my heart out not to be with my sister but in the end I realised she just needed to talk and that she and her husband needed to work through their grief together alone. I visited her at last Christmas after the baby had died in August, she was doing well and had a fantastic attitude towards why this has happened to her and had realised no one was to blame. Of course they tried again this year only to have a miscarriage in August (unfortunately on the same day her son died last year). She is going to try again and will keep trying again until she has a child.
She visits the baby cementry when she wants to be near her son and had a plaque made in his name. She kept his pictures, the good luck cards and preemie clothing she was given and made a memory box for him, she looks at it when she feels brave enough but still cries. The only thing she doesn't understand is why she misses something she never really had and I can't explain that, I just tell her to have hope and never forget the beautiful baby she had.
I also contacted a group called Compassionate Friends, they are world wide and they sent a lot of information on grief and the different ways it can represent itself. Their website is www.compassionatefriends.org and the Alameda County chapter tel # is 510 835 3579.
Please let me know if you have anymore questions or just need a person to talk to yourself, I hope I have helped. Just be there for your brother, let him know you love him and his wife. Time does heal, I thought I'd never get over the babies loss but here we are one year later and things are alot easier for my sister and myself. Take Care. helen
My twins were stillborn at 27 weeks a year ago, and I have to say that just having people reach out to us helped a lot. Call them often. Let them talk about it or not talk about it, depending on what kind of day they're having. Don't be afraid if they get emotional. Don't try to cheer them up. They don't need to cheer up, they need to grieve. Go down there if you can and if it's OK with them. I was amazed at how much small gestures of caring meant to me--things like the flowers my office sent to the hospital a few hours after I was admitted, and sympathy cards. From family, it helped (and still helps) to know that they miss our sons too. I was very thankful they came out here for the memorial service. The loss was very real and treating it like any death in the family was crucial to us in those early days.
Acquaintences who'd had losses of their own brought us some excellent books that we found very helpful. ''Empty Cradle, Broken Heart'' by psychologist Deborah L. Davis was a good walk through the emotions that surround pregnancy and neonatal loss. ''Tears of Sorrow, Seeds of Hope'' by Rabbi Nina Beth Cardin is a wonderful book of prayers for those struggling with infertility and grieving pregnancy loss (from a Jewish perspective). Although I wouldn't suggest these to them yet, if they decide to try again, there are also some good books for people who are pregnant again after a loss (''Trying Again'' and ''Pregnancy After a Loss'').
There are several Web sites dedicated to pregancy and neonatal loss--Alta Bates gave me a list before I left the hospital--but I never used any of them enough to suggest one over the others. The only one I really looked at was www.misschildren.org. I found Web sites and the local support group to be a mixed bag. On the one hand, it was comforting to talk to people who were feeling similar emotions, on the other hand, you hear a whole lot of other ways that babies die.
Take care, and please feel free to send me a note if I can help in any way. They have a long, hard road ahead of them. Just do what you can to be there for them. The small stuff really does help. Pam
All I can say is 'be there for them.' My friend wants to show me pictures and talk about him. I look and I listen. I hug her and I cry. I use Charlie's name when I talk about him. She takes the lead.
I guess that may not be very helpful. But, there aren't any easy answers, -hear you on this one...
You never, ever get over the loss of a child. But you learn to live with it. You grow, you get stronger, and you deal. It becomes part of who you are. It is a permanent scar. The sooner you stop trying to ''get over it'' the sooner you will be able to continue with your life. A changed life. I was hurt and impeded in this process by people thinking it was time for me to get over it. It took years for me to realize I never would, even more years to know that it was OK. I just needed to ''get on with it'' which is different because when you get on with it, you take ''it'' with you. When you are trying to get over it, you leave it behind, which is impossible so you can get stuck there.
About three months after my baby died, the sympathy and understanding mostly dried up. People moved on and I was left behind. There were a few impatient comments like ''don't you think it is time you got over it?'' So I hid my pain, I hid my memories. I became a model of fortitude. But every day, every single day my daughter was not there...is still not there. Every time a stream of cousins ran by at family events, I could see the gap, the missing girl. In my mind she grew, now she's 12. When I take a walk with my little sister (who is 11) and she's running ahead, my daughter is not there beside her and so it goes.
One September morning when I took my son to his first day of 3rd grade, I was inexplicably sad. All day long. It finally dawned on me that that would have been my daughter's first day of Kindergarden when a friend mentioned her daughter's first day. The subconscious brain remembers even when the conscious one does not. This is normal.
The turning point for me came when a friend (with a daughter the same age) sent me flowers on my daugther's 7th birthday. She had not known me when it happened, but I had told her about it. Up until then, my daughter's birth day was the loneliest day of every year. Slowly over the next years I started to take out her box and create an altar out of the things in it on her birth day. I have a butterfly for every year (made out of feathers, and other things)and about two years ago I added a butterfly stamp (because I couldn't find any other kind of butterfly).
Surprisingly my other children (and now grandchidren) took to this tradition and participate fully. They move things around, add their own things and talk about it. Last year my oldest daughter brought her boys shortly after the altar was up (I put it in a very accessible place). They looked at all the cool little things (baby mementos and some things that would appeal to an 11 year old). Then they stamped their hands with the butterfly. Now everyone that visits the altar stamps their hand.
This year my nephew was doing kirigami (paper cutting) that day and taped one behind the altar. The paper and scissors became part of the altar and soon everyone, family and friends, was creating colorful cutouts to decorate the wall behind the altar, they all had butterfly stamps on their hands and cheeks. For this day, my daughter was there, for all of us. It has become a family holiday. I could not have designed this tradition. It grew because I learned to be comfortable with my pain (it hurts, but you don't have to be afraid of it), so my people feel comfortable around me and I am able to share the moment with them, even if they don't feel same way I do.
One word of advice to those who care about someone who has lost a child. Don't stop inviting them to your baby showers, children's birthdays, or stop talking about your own babies. My community, with the best intentions in the world stopped inviting me to baby showers, conversations would stop when I came into the room, (they were even afraid to tell me when someone got pregnant). I finally had to crash a baby shower to get re-instated! They apologetically explained that they didn't want to remind me of my loss.
You cannot remind someone about something they can't forget. You can make them feel excluded, lonely and like a leper. Let them choose when they are ready to start attending baby showers and such, be understanding when they can't and let them know that when they are ready, they are welcome. a mother
A friend and collegue of mine just gave birth to a baby who will not survive. I am devastated -- and need some suggestions about concrete ways to help her. This is her first baby. I would like suggestions -- from people who have been through this tragedy (or close to somebody who has) about what helps, what hurts. Sad and Feeling Helpless Friend
Maybe you can pick up the mail, shop at Monterey Market for fresh produce, cook dinner once/week (on the same day), do the laundry. If she's a good friend you can call every day or week to find out how things are going. You can't make things better, but you can take some lesser worry off the pile. A baby present would be bittersweet in this case -- but depending on the circumstances not out of order. A baby was born, and the world will never be quite the same.
The offer of help that always comes to my mind, was that of a neighbor who walked my dad's dog, every afternoon for 13 weeks he was visiting the hospital when my mom died. After the initial offer was made and accepted they didn't even talk, most days. The neighbor came and got the dog, made sure he got a good run, then went home. Actions speak louder than words -- when words can't express.... Heather
- Say you're sorry. Keep it simple. DON'T say that you know how they feel, that this was ''meant to be'' or that they ''can always have more children.''
- Feel them out to see if they want visitors. They may want to just be with family or by themselves through this difficult time.
- Drop off a complete dinner or a bag of groceries. Chances are, your friends will be in no mood to go out and deal with this stuff themselves. It will be GREATLY appreciated.
- If they are spending a lot of time at the hospital with their baby then offer to take in their mail, pick up their newspapers, water their gardens, walk/feed their pets, etc.
- If they are planning a memorial service for their baby, volunteer to help with logistics, to help xerox programs, pick up the catering, etc.
- Be prepared to have your offers to help rejected. Don't be offended -- they may just want to be alone for a while.
The idea here is to provide a lot of background support, which they will need to get through this very emotionally raw time. In terms of emotional support, that is more difficult and will really depend on how close you are. Based on my own experience, it may be more helpful for your friends to find other parents who have gone through a similar experience (via a support group, such as Alta Bates' Support After Neonatal Death) or to seek professional help, such as a grief counselor. Hope this helps, Rockridge Mom
First, nothing in life prepares you for the death of your child. There is no way anyone can know how devastating the experience is. I appreciated having people acknowlege my grief and admit they didn't know what to say, rather than not say anything for lack of words. We received some very thoughtful, touching, and profound sympathy cards from unexpected sources. It is okay to not know what to say. Honestly, sometimes I didn't know what to say. Our community gathered around us in many ways. Some would hug us and talk. Some brought over dinners. Some helped out with our children. My best girlfriends really rallied around me. I knew I could call them whenever I needed to talk. Not surprisingly, I needed to talk much more than my husband did. My girlfriends saved me hundreds in therapy! Also, be careful about the words you choose while trying to offer comfort. While intellectually you know your child would have a terrible life if kept on life support, turning off the machine was the hardest thing I have ever had to do in my life. Our daughter looked like she was sleeping ... I kept expecting her to wake up.
Also, let your friend know there are support groups specifically for neonatal death. They usually meet twice a month and are free. They are usually called SAND or HAND, Support/Hand After Neonatal Death. These groups can be very helpful. There is something comforting about sitting among a group of peers who have had a similar experience. These people can cry and laugh with you. I would encourage her to go to several sessions.
There is a great book a friend gave me about 4 weeks after our second daughter died. A Silent Sorrow Pregnancy Loss by Kohn and Moffitt. It deals with all types of pregnancy loss from first trimester to neonatal death. It has chapters about family, friends, subsequent pregnancies, grandparents, memorial services, you name it. This book really helped me and gave me the courage to get pregnant again. Although I confess, I spent my third pregnancy convinced my daughter was going to die ... but that is another story!
In another book about loss, the author gave a great example about grief that I found to be true. Grieving is like standing at the edge of the ocean. In the beginning, the waves are big and continuous. They knock you over. As time goes by, the waves get smaller and are not as frequent. Eventually, the water just laps around your ankles and you can remain standing. I promise your friend, it does get better with time. Your child's birthday and the anniversary of it's death are difficult for several years. Eventually, you compartmentalize your grief and keep it tucked away for longer periods of time. In the beginning you are just raw emotion. Expect it. Also, just when you think things are getting better, something happens and transports you to the day your child died. Grieving is not a linear process.
I hope some of this helps you and your friend. Your friendship is the greatest gift you can offer her during this incredible difficult time. Sabrina
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