Survivors of miscarriage or stillbirth, I need your input if you can.

[heydooney]

My name is Danielle and I am a student at Columbia College in the psychology program. I am currently taking a group processes class, which is about leading therapy groups such as support groups. We have been assigned to design a group and write a proposal for starting it. I have decided on a support group for families affected by miscarriage, ectopic pregnancies, stillbirth, and newborn death. It is a difficult subject, but I chose it because it is very common in my extended family, but mainly because of my cousin, who has suffered two losses, one complete miscarriage and one ectopic pregnancy. Her experience with her doctor was not good - all facts, no caring, and from what I've heard from others, many women experience the same thing. Further, there is a silence that surrounds the issue, and even though the March of Dimes and other statistics show that up to 1 in 4 pregnancies end in miscarriage or other death, it's just not talked about. You could know someone all your life and not know their suffering, and that saddens me. As I've researched this topic, I've found that many people I thought I knew well also share this common heartache.

I have researched facts from the Internet and books, but now I need people. If you are able, please take the time to answer a few or all of the following questions. You don't have to answer here; you can PM me. I realize my journals never get much attention, but I feel that contacting any of the CafeMom groups would be too intrusive and possibly hurtful, as I am not part of that population, though it is a topic dear to me. Hopefully I can get enough information here or others can pass this post on in a sensitive manner. Your answers will help me design my group proposal - they will NOT be included in my final presentation, and your name will never be used.

1. Are you/ were you part of a support group? Please tell me about it. How often did you meet? Did you have to sign up? How did you find out about it? Was it open to everyone or just mothers?How long did/will you attend? What did you like, what didn't you like?

2. If you were to start/join a support group, what would be the most important aspect to you - room atmosphere, agenda/no agenda, speakers, group size limit, etc.?

3. What would you expect of a leader in a miscarriage/ birth loss support group? Would it benefit or hinder the group if the leader had experienced the loss of a child? Would you prefer a MD or psychologist or someone else?

4. What would cause you to keep coming to a support group? What would cause you to stop coming? 

5. Who have you felt most supported by - doctor, family, friends, etc? 

6. Any other information you think I would find helpful?

Thank you so much for your help,
Danielle 

[gardenwmn]

Apr. 18, 2008 at 4:09 PM

1. Are you/ were you part of a support group? Please tell me about it. How often did you meet? Did you have to sign up? How did you find out about it? Was it open to everyone or just mothers?How long did/will you attend? What did you like, what didn't you like?   No, back in the late 1970's support groups were not heard of.

2. If you were to start/join a support group, what would be the most important aspect to you - room atmosphere, agenda/no agenda, speakers, group size limit, etc.?  II think group size...not to big, it's hard to connect with others when the group is too big. 

3. What would you expect of a leader in a miscarriage/ birth loss support group? Would it benefit or hinder the group if the leader had experienced the loss of a child? Would you prefer a MD or psychologist or someone else?  I think that the group leader should be a woman who has experienced the loss of a child.  Why would you want a doctor that has not had that experience and thus cannot comprehend the loss of a child (even at early stage).  I have suffered two miscarriages with the first one being the most traumatic.  And I got lucky...I was rushed to a Catholic hospital where the nurses were loving, kind and sympathetic.  They also tried to explain the unexplainable.  My doctor, on the other hand told me that there was no way they could tell me what went wrong...my baby was just a blood clot ...now how could he know?  Did he wrap him in a towel between my legs, like I did?  Did he see his tiny hands? 

4. What would cause you to keep coming to a support group? What would cause you to stop coming?  Making a "connection" with the other mothers and the group leader.  I would stop coming if the group leader did not promote open conversation and the opportunity to share what had helped us and what had hurt us.

5. Who have you felt most supported by - doctor, family, friends, etc?   At the time, my best friend was my best support.  My family wanted me to "get over it" and quit crying.

6. Any other information you think I would find helpful?  Not really, but I wish you the best in your study!

[dragonlady2k2]

Apr. 18, 2008 at 4:27 PM i have delt with several miscarriagesand one pre term birth that died 45min after he was born . it is not easy to deal with at times but we survive as best we can and i have been blessed with my 3 girls. i have had a long history of prematurity and early labor starting at 5 months and being on bed rest from that time on  . i count my blessings and take things one day at a time .i understand the pain that comes with that kid of loss and would never wish it on anyone .peace and love

[londoncouple1]

Apr. 27, 2008 at 8:08 PM

1. Are you/ were you part of a support group? Please tell me about it. How often did you meet? Did you have to sign up? How did you find out about it? Was it open to everyone or just mothers?How long did/will you attend? What did you like, what didn't you like? We have had 2 losses. Our first was a boy who was stillborn at 20w and our second was another son that was born at 24w and passed away 2 weeks later. We did not join any support groups.

2. If you were to start/join a support group, what would be the most important aspect to you - room atmosphere, agenda/no agenda, speakers, group size limit, etc.? I would be more apt to join a support group that was somewhat small. I wouldn't like the group to be in a hospital/clinical looking space. And as far as agenda/speakers/etc. I think it would be good for a group that if they were meeting weekly that they structured it like WEEK 1-speaker WEEK 2-discusion group for women who have experienced loss only WEEK 3-discusion where family and friends are welcome WEEK 4- discussion on a specified topic. I would make the group this way so if women were more comfortable in a specific format they could come once a month and if they liked the diferent options they could come weekly. I like the idea of a group being just for the women who have had the experience but setting a time where they canbring their support people. I think the family/friends week would be benificial especially for the newer women until they are more comfortable talking and being in group without someone they "know".

3. What would you expect of a leader in a miscarriage/ birth loss support group? Would it benefit or hinder the group if the leader had experienced the loss of a child? Would you prefer a MD or psychologist or someone else?I think it would be best to either have someone who has been through it and has come full circle in the grief process (a woman who is still a total mess would be a bad idea in my opinion. Or a female pastor who is trained in grief and loss of a child (like someone from pastoral services in a childrens hospital)

4. What would cause you to keep coming to a support group? What would cause you to stop coming? The women in the group. If they were people that I felt comfortable with and was building relationships with I would continue to come. If I wasn't comfortable I would stop going. Also I have noticed that sometimes when i groups people use the opertunity to do the "pour pity me" thing. If the group was about self pity and staying in the pain I would not go. If it was about moving forward and going through the grieving process I would be more apt to go.

5. Who have you felt most supported by - doctor, family, friends, etc? My family has been very supportive. Though I think we need to remember that they have lost too and we can be there for each other. After the death of our second son, Cloud, I read the grandmothers grief book that the hospital gave me to give to my mother. It talked about how a grandmother has lost their grandchild and they see their daughter in so much pain and there is nothing they can do about it so they are also grieving for the daughter.

6. Any other information you think I would find helpful?Nope, but best of luck with your project.

[Figlet]

Apr. 30, 2008 at 5:24 PM

1. Are you/ were you part of a support group? Please tell me about it. How often did you meet? Did you have to sign up? How did you find out about it? Was it open to everyone or just mothers?How long did/will you attend? What did you like, what didn't you like?

Not part of one but women in Catholic mom's group in town were very supportive and sharing.  Its so common

2. If you were to start/join a support group, what would be the most important aspect to you - room atmosphere, agenda/no agenda, speakers, group size limit, etc.?

atmosphere, philosophy (its different for people who believe in God/do not; still hurts just as much but different thougths and one need not worry about stepping on the others toes.)

3. What would you expect of a leader in a miscarriage/ birth loss support group? Would it benefit or hinder the group if the leader had experienced the loss of a child? Would you prefer a MD or psychologist or someone else?

Empathy.  Yes it would help if they had experienced but perhaps a medical professional would be fine too who had worked with moms who went through this

4. What would cause you to keep coming to a support group? What would cause you to stop coming? 

Comforting atmostphere.  Honestly, having a healthy baby would put me off it

5. Who have you felt most supported by - doctor, family, friends, etc?  family & friends.  Doctro SUCKED

6. Any other information you think I would find helpful? Have childcare for those with other children.  It would be a very neat thing to have but some people already need childcare and couldn't bring a kid to something like this.

[inmemoryofkat]

May. 12, 2008 at 8:13 AM

1. Are you/ were you part of a support group? Please tell me about it. How often did you meet? Did you have to sign up? How did you find out about it? Was it open to everyone or just mothers?How long did/will you attend? What did you like, what didn't you like? *I am not  part of a support group at this time. 

2. If you were to start/join a support group, what would be the most important aspect to you - room atmosphere, agenda/no agenda, speakers, group size limit, etc.? *caring people who have been through similar situations as you have.  Someone you can relate to.  No set agenda just to be able to give support and advice on needed basis.  24/7 .............no speaker just a group leader and if it is an online support group the larger the better and the more people you can reach and help.  If it were to be an in person group meeting it should be held in smaller groups.. It is so much easier to tell your story with small intimate groups.

3. What would you expect of a leader in a miscarriage/ birth loss support group? Would it benefit or hinder the group if the leader had experienced the loss of a child? Would you prefer a MD or psychologist or someone else? Someone who has been through it..............only then do you really know what someone went through.  If it were ran by a MD or other medical professionals, make sure they are caring and compassionate unlike the ER Dr. I had when I had an emergency ectopic pregnancy removed.  I am a 32yr old women and he treated me like I was an idiot because I didn't know I was pregnant in my tubes.  He was cold and made my pain that much greater.  He belittled me and made me feel like it was my fault and like I was a teenager.   My ectopic pregnancy had ruptured at home and I had to get rushed to the hospital.    Please I do not wish my experience on anyone, the loss of the pregnancy is already the worst feeling.   Please know the group leader must be the most caring and must lead with a purpose to help all the women whom have already had to go through so much pain physically and mentally.

4. What would cause you to keep coming to a support group? What would cause you to stop coming?  If the group felt like family and they truly cared......................I am really not sure...............if the group contained people who had gone through what I have gone through I would not stop going. 

5. Who have you felt most supported by - doctor, family, friends, etc? My boyfriend stood by my side all the way through the process.................and his family.

6. Any other information you think I would find helpful? Just talk to people who have gone through it..................be passionate with everything you do....................and if you always have others well being in mind you cannot go wrong....................do it for the right reasons because it's people's lives you are dealing with.....................................Support groups can do so much good................Good luck in all you do and never give up...........because there are so many people who need help................J