I am going to freely add myself to the group and ask the question – should we as doulas be educated in the subject of perinatal and infant loss? Should we provide information about parental rights, options and resources when it comes to the loss of a baby?
My answer is yes.
“I don’t think I was equipped to help a family through the process until I’d attended dozens of births” ~@dsfq
“from experience, I think the best way is to let them know you’re there for them and wait for the parents to come to you” @barefootdoula
As women in these roles, we step into a long history of women helping women make choices as mothers to be, helping to support mothers in labor, supporting the safe delivery of her baby and hopefully if needed supporting her if she needs to say good bye to that baby. As we have shared, guided and educated, so we must also offer to hold, allow and grieve.
I feel we need to consider and perhaps start the discussion with the idea that just as we encourage women to believe in their bodies and it’s ability to naturally birth their baby, we also need to encourage women to know that in the unfortunate moment that they realize that they will now be a mother to a forever baby*, they now have to believe in their heart and it’s ability to feel the pain and one day recover.
“If someone would have told me at 23 years old that my first baby would be born with a severe heart defect and that she would not survive, I would have told you that there was absolutely no way I could handle it. Period. But I did.” ~Shanta
“we don’t need to perpetuate the fear KWIM (know what i mean) Educating them is one thing but I’d stay far away from discussing dead baby scenario” ~@barefootdoula
For most new parents pregnancy is a time to celebrate, as it should be. Life, and especially new life should be celebrated. It’s the first step in the long journey of being a parent. Books are bought, names are put on a list and childbirth classes are booked – parents are ready to embark on this exciting journey called parenthood. And our society has made the whole process quite exciting and happy, with tv shows, magazines, community “everything you need for baby” shows.
It’s rare to never that we talk about what happens when your baby doesn’t go the pretty nursery with a cute pink or blue blanky.
“We did not know before she was born that Emma had one of the most severe heart defects, HLHS, so the day she was born, after we learned our options, I just kept saying “this happens to people in movies, not to people like me”. But it was me. ~Shanta
I want to be a doula so that I can take part in the celebration of new life and I definitely don’t think we should be approaching this exciting time with a constant cloud of doubt and fear that babies die. I want to be a doula to help parents move past their fear when it comes to pregnancy, childbirth, infancy and honestly, death. I think as educators and supporters, we need to present that yes, we are here to celebrate along with you, but the bigger part of our partnership with new parents should be to share, teach and give guidance, hopefully in all areas of being a parent to a baby.
So what topics should be covered and how in depth do we go? Well, i can only share what i would have liked to know looking back at our experience as young parents who did not think in terms of taking responsibility for our own experience and trusted our caregivers to do what was best for us.
Firstly I think that every pregnant woman should have a doula. More information needs to be given to women about the benefits of a doula for their birth experience. I realize that affordability can be a factor as doulas are not covered by healthcare, but that could change if more women wanted doula care.
I believe parents should understand that their doula/midwife can support with the same intensity in the event of loss as they would in the event of a healthy birth. Being in this role allows us to help our clients manage the situation better then close friends or family who will also be emotional (or more so in some cases) as the parents. Also important for some families is the need for an advocate when they are not emotionally able to deal with the array of personnel, emotions and decisions that are thrown at them in these times.
“Soon after I got to the hospital, they explained that they wanted to sedate Emma, none of the reasons indicated an emergency to have it done “now”. My gut said “no, I haven’t even gotten to hold her or get to know her…” but I said yes because I didn’t know how to say “I need time”. I’m sure they would have given me time, I just didn’t ask. I know that if I had had a person there to support me, I would have told them my feelings, and likely they could have spoken up for me. but i didn’t have that “someone”. ~Shanta
Parents who have been given “unthinkable” news, are just that, not thinking. They are feeling and everything feels bad. Just like any other human, having a horrible experience, they do what they think will make the feelings feel less bad – and in the short term it may work, but long term I know there can be regrets. Having a person to make suggestions about ways to validate their experience is an invaluable gift that a doula/midwife can give parents in this situation.
“I missed out on the first hours with Emma where I could have breastfed her, held her and just been a “normal” mom for 3 whole hours. When you only have your baby for 15 days, 3 hours is a HUGE amount of time. Unfortunately I was not assertive and felt like if I was “allowed” to see the baby, they would come and get me and bring me to her. I think a doula or midwife might have encouraged me to be with my baby.” ~Shanta
It’s difficult to make suggestions when people are so very sad. I get it completely, but I also know that the courageous nurses that shared ideas with us made a huge difference. One nurse encouraged us to take pictures of everything so in the event of a good outcome Emma would be able to see her experience. She said “you can always throw them away if you don’t want them in the future.” One offered to have a photographer come in after Emma had passed and take pictures, we did and they are beautiful. The hospital offered to do molds of her hand and foot which we also cherish. These options won’t be available at all hospitals or for all situations, but can still be offered, suggested and in many cases carried out in private. All things can be thrown away if they continue to cause pain, but the parents can never go back and get them.
That’s it. Well all I can think of right now.
I would plan to say something like “As your doula, I am here to support you for your entire birth experience, good or bad. If you get the unthinkable news, I can/will be your voice, your support, your confidant, while you go through the first days – until you don’t need me anymore. I can help you make the birth of your baby special even in unthinkable circumstances. I encourage you to call me if this happens.”
“When I create a birth plan, I always ask what the parents wishes are in case of death near or after birth i.e. pictures, holding baby, keeping baby with them, speaking to a chaplain, contacting certain family members or spiritual leaders. I also have a list of community resources available to them.” ~@real_bethy (wow this is soooo awesome, exactly what I am talking about!)
“I discuss loss with CBE clients. I read them the story @dsfq posted & talk about ‘unexpected outcomes’ of all kinds.”~@doulamama
I think sometimes we assume we know what people need/want in these very difficult, sad situations. The truth is that these are parents who are having or have had a baby want that life to have meaning. They feel proud of their baby and even though they may be experiencing it’s loss, have the same feelings as parents of a healthy baby.
They also deserve to have the very best birth/life experience with that baby. I can say from experience that the times that were the most difficult; washing Emma and pulling tubes away from her face after she had passed, are now some of the most cherished memories I have with her. Just as we encourage parents to be present and take in the joys of being a parent to a healthy baby, we need to encourage the same for parents who are losing their baby.
There is no way to prepare for the unthinkable, so I’m not talking about going into a lot of deep detail when discussing the topic that loss may occur, just to make them very aware that you do have a role to fulfill even in this type of situation, if that is what they need/want.
So, do we need more, better, education on this topic? I think so and hope that this opens the dialog for us as doulas/midwives and childbirth educators to consider how we can give our clients all the tools they need to parent their new baby.
In the discussions I had with other doulas (working doulas) it’s clear that everyone has their own experience and their own comfort level with discussing this with their clients. My goal of writing this was to simply start a conversation on whether it is necessary and if we should have more training/knowledge in this area, not to say that it has to happen.
“I DO however, believe there needs to be a LOT more support and information readily available to parents who experience loss and it needs to be at the fingertips of those involved in their care so parents don’t have to wait.” ~@dsfq
“I think you should put together a “grief counseling and perinatal loss” workshop to help doulas learn to help clients” @hamiltondoula
“yes a grief counseling & perinatal loss workshop for doulas is needed I am a very empathetic being w/no training” @barefootdoula
* this is my own term as there is no official term for a parent to use when they have lost their baby
**this is of course within reason that there is no emergency situation at hand
Lovely post. VERY well written and absolutely essential reading for those of us working in the birth field. Thank you for starting the conversation. I look forward to reading where it goes and what others have learned from it.
Take care
Sam aka @dsfq
I applaud you for raising the issue of client education related to perinatal loss.
As many of you know, I feel very strongly about this issue, having experienced the stillbirth of a baby girl (true knot, 26 weeks) and having both written and spoken extensively about the issue of perinatal loss and bereavement.
While these are difficult issues for both the doula and her client, I feel that a woman who is prepared about these possibilities ahead of time is less likely to feel blind-sided and betrayed after the fact, should the unthinkable occur.
See this recent post in my blog for links to a number of relevant resources:
http://thestar.blogs.com/anndouglas/2009/04/a-beacon-in-the-dark-night-of-grief-glow-in-the-woods.html
Ann
Thanks for this.
I’m not sure how you do the training with doulas – there are several good books out there on perinatal loss, they’ve been available for years. I’m pretty sure they’re on the reading lists of every doula training organization. But doula trainings demand very little of us in terms of reading, and if you’re choosing three or five books out of a list of dozens you’re unlikely to choose one about loss unless you have a special interest. And training workshops are just workshops – they’re not courses, and there’s very little time so you have to really pick and choose what you cover.
Having resources available is important, but difficult. The hospitals deal with perinatal loss all the time, but a doula, not so much. I’ve attended well over 100 births over the course of 8-10 years, but I’ve only had one loss and one significant anomaly. Websites and organizations I’ve accessed in the past have disappeared, or something new has come along. I need the resources so little that when I *do* need them, everything’s changed.
Every hospital I know of has protocols for dealing with loss that usually involve privacy for the family, photos and mementos that will be kept at the hospital for a period of time if the family don’t want them right away, and access to bereavement services. Perhaps smaller centres have less experience, but unfortunately big hospitals with high risk clientèle see it a lot.
So yes, doulas have a role. Some sort of subtle notice to parents during pregnancy that you’ll be there for them no matter what is a good idea. Making a big thing out of it is not, IMHO. Many years ago I used to do unexpected outcomes in prenatal classes, but I’ve let it go over the years. I had the strong impression that it scared families and increased their worry and even their willingness to accept interventions, without giving them much that would be helpful in the event of the worst happening. I encourage women in class to avoid other people’s labour horror stories when they’re pregnant, so.
I don’t want to contribute to their fear. I also don’t want to make them feel that death is a topic that’s off limits either if they have questions, so it’s a hard balancing act sometimes. I tend to follow the clients’ lead – I hope that’s not a cop-out. I’m thinking…
I’m a doula and if a client tells me she has a fear of her child dieing I’m going to discuss it. I think the more we talk about our fears the smaller they become.
I had a mom whose labour was slowing down because of her fear and we discussed “what if your baby died” right there in the birthing room. It was exactly what she needed and she went on to have an amazing birth.
@Sam – thank you – I really appreciate all the support you’ve given me since I joined Twitter world!!
@Ann – I have to say Ann that I hold a very special place in my heart for you. When I was expecting ds (#2) it was 4 months after Emma had passed. Your book was in the grocery store and I bought it because it had Canadian information.
I know that I read the chapter(s) on loss and I knew that you understood. It was so awesome to me that I was reading words from someone who knew and had experienced what I was feeling. There was a human voice behind your words and they were soothing for a heart desperate to be a mother yet not ready to have another baby.
Thank you for being such a positive voice for mothers of all kinds and for including the list of resources – likely a good place for us all to start.
@TO doula – I hear what you are saying and some others expressed very similar sentiments that you write about.
I have been researching doula training via DONA and CAPPA and there are no requirements to read a book about loss nor are there any recommendations. I am going to take my training from Birthing From Within and they don’t even have a book on their list which is significantly more extensive.
And honestly, I don’t even want to read a book about loss, it’s sad and who wants to spend hours thinking about babies that are sick and might die? I get it, but as Ann mentioned I was the parent who was blind-sided.
We had three ultra sounds with Emma, it was only the last one that found a problem, the day she was born. There was no confirmation till after she was born.
I don’t think doulas or CBEs need to take a course in perinatal/infant loss. I don’t think it’s appropriate to start moving into grief counsellors – that is NOT what I am talking about. I think workshops are a great place to start. It would allow doulas to share their experiences, new resources, new ideas, new information and have parents also share if they wanted.
And as I mentioned hospitals do have a lot of resources and can be very supportive to parents – but photographers that donate their time may not be available at 3am or the lady who does molds might not be on that day…it’s not a perfect system and i think every parent deserves the best experience possible.
I offered to donate the breastmilk I had pumped for 15 days and the nurse said “oh we can’t use it because your baby had a heart defect”. This woman was not trying to be mean, just honest but it was a blow. Not everyone is taught sensitivity in hospitals or in life for that matter. Another issue that we constantly had to deal with was the social worker…as I said, it’s not a perfect system (and I feel we had a good experience, imagine the parents who don’t feel that way).
@Shannon – WOW!! I am with you 100%. What an approach…and I totally agree, the more we talk about our fears the less power they have over us and this is certainly true with the topic of death.
My impression is that if you have experienced loss as a parent or been a doula who has supported a family in this situation, you feel that we need more information/education on this topic. So how is the best way to get the information to doulas and what information exactly?
There is also the “fear” of perpetuating more fear talking about issues regarding loss.
If we deal primarily with healthy babies, do we need to learn more about this – or could our time be better spent on other more prevalent issues?
Thoughts…?
Cappa Canada and Childbirth International both have books on loss on their reading lists, but they’re not mandatory. I’m really startled to see that DONA doesn’t though. Very strange. Check CBI, though, if you want to see a really comprehensive reading list. I just wish they insisted that trainees actually read more of it.
But yeah, I think standard doula training is woefully inadequate in just about every way.
Until people can really make a living at it, though, I don’t think there will be success with more comprehensive training, which would take more time and money.
We lost our son at 26 weeks…and I had to deliver his tiny little body.
Only the social worker at the hospital handled our pain and suffering..the nurses did not know WHAT to do.
And my dr stayed MILES away from us.
It would have been lovely to have had a doula or midwife help us through the ordeal.
I am not a doula. I am a mom – a new mom. I haven’t been faced with any sort of unexpected outcomes whether it is illness, deformity or death of a child. But when I was preparing for the birth of my daughter, I did my research and I made a birth plan. It never even occurred to me to discuss what would happen in the event of an infant death in regards to our wishes. Shortly after her birth, we “faced” the issue of who would raise her if anything happened to us. I know it is horrible to think of these things, and it is human nature to believe that if we think about it, it will happen. Somehow, we need a way to move past the superstition and make your wishes known ahead of time. Think of it as one of those necessary evils, and write down your wishes. Because if the unthinkable ever happened, it would be a small measure of consolation to you to know that your wishes were carried out and you got to hold your baby or make imprints of her feet, or anything you needed to do.
You have this mom’s support in giving doulas bereavement training!
@crunchy – I am so sorry to hear of your loss. I’m glad to hear that you had someone to give you some kind of support but I’m also aware of the kind of support the social workers give and even though well intentioned, they are supporting many families – I didn’t find ours to be very “helpful” – kind yes, but not helpful.
@themoneyfamily – thank you for sharing your thoughts. It isn’t something most families want to think about, but then if it does happen it is so overwhelming.
I think it should be encouraged as part of the birth plan, but how to make that happen is something else…
This was a comment posted on my http://www.mybestbirth.com page where I posted this also:
by: Delia Muhammed:
I defintely think this is something that should be taken on board.
As a Doula (first) and midwife I took it for granted that because my role is to help couples become parents. It did occur to me that death could ever exist. I only saw happy faces looking at their newborn.
Then I faced death for the first time whilst doing my midwifery course. It hit me so hard that I actually became scared to inspire couples and make them feel positive about their birth experience just in case it went wrong.
Organizations who help in bereavement could do workshops for doulas. That way we would have a better understanding of what to expect, how to respond, what to say etc.
I also think that as individuals we have to be open and express our own fears about death. As many of us have experienced it in one way or another. How it has affects us, whether we have ‘gotten over it’, are what has to be spoken on.
I won’t go on but to just open the floor to other thoughts.