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Motherhood after the death of a child: pregnancy, infant

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Starting a Non Profit for those who have lost--need input

Kirsten - posted on 11/02/2010 ( 3 moms have responded )

Okay I need your input. I have started a non-profit for people who have lost infant children--whether it be miscarriage, stillborn, postnatal, SID or other related problems.

I will tell you a little about what happened with us and how I got to the point of starting this. Have two boys and two girls, a 10 yr old boy, 8 yr old boy, a 5 yr old (angel) girl and a 3 yr old girl. Now when I was pregnant with my 3 child, everything seemed to be going ok, there was one scare but they were 99% sure that their wasn't anything (down's syndrome--ultrasound showed nothing), well at 37 weeks I was in pain, thinking eh, well my first born was born at 38 weeks. Ending was I went back to my weekly check up and we found no heartbeat. The hospital and staff didn't know really how to deal with it, not that it doesn't happen but you know as well as I do, you don't understand fully until it happens to you.

Our community and several communities around me have nothing to help deal with this issue. I know how I felt and things I wished would have been in place during the time it happened to us but I want to hear from you, what did you find that would have been helpful during your hospital stay and afterwards? What was the hard decisions that you wished you had been aware of? How did you deal with the loss? What are you or did you do during the grieving process? How long has it been?

Also, have you had a child since the loss? What were your feelings during the pregnancy after loss (PAL)? Did you keep the same doctors, same hospital? What do you wish that would happen with the amount of care during the PAL--was it more, less, same? What do you feel the doctors did to ease concerns or not do?

Anything else you need me to know?

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Renea - posted on 11/12/2010

I understand what you are saying. The same types of things happened to me when I miscarried. I went to the doctor's for regular check up and sono and after the sono I was told that they didn't find a heartbeat. The doctor said to me "I am sorry but we did not find a heartbeat, your body must have absorbed your fetus." This being my first pregnancy after enduring infertility treatments, I did not understand what the doc was saying to me. He then told me to come back on Monday, it was Friday, and they would do a DNC and he sent me on my way. Well, I went into a complete miscarriage on Saturday night and I had no idea what was happening. All I knew was that I was in so much pain. My husband took me to the ER and they didn't say much to me at all. Then the ER doc said "let me take a look" then when he was done "taking a look" he said to me "do you want me to tell you what I just did?"

I was in shock! I said "NO, I just want to go home.

Needless to say, I really let my doctor have it the next time I saw him. I explained to him that being that that was my first pregnancy that he should have explained to me what might happen and what signs to watch out for. I spent hours in pain because I had not idea what was going on. I think that the doctors need to be educated on how to handle such a situation but good luck with that.

I think the best thing that you could do is start a support group, or even a support hot line for women who have to deal with such a loss. You could start it as a hot line number where you have a group of women who have dealt with this pain ready to take a call from a woman who has just learned the pain of miscarriage. If that is successful you could maybe turn it into an actual group that meets once a month or so.

After my miscarriage I was blessed to have a daughter a year and 1/2 later. She was my dream come true. My daughter passed at the age of 2 years and 24 days. And to help me through that grief, I started a non profit foundation that helps couple to afford the cost of infertility treatments. Through this foundation we started a support group for couples who suffer through the agony of infertility. So many couple have said that it has been so helpful for them so this is where my suggestion come from.

We don't have a full time counselors it is just a group of us that get together and share stories, tears and ideas.

I wish you luck with your foundation and I hope that this helps you with your idea.

Kirsten - posted on 11/08/2010

Thank you for your reply. I had my family and friends as support also, but they were at a loss as to what to say or do. The books can be a good source of information or confirm what you are already feeling. I saw a counseler who lost a child, she was very empathic and it helped knowing she understood. I appreciate your sharing your story. Hopefully I will have more info to share in the next month.

Jacqueline - posted on 11/06/2010

well here's my story i am a mother who has lost my daughter to sids and im very happy to see that you are doing this its very nice and my story is i found out i was pregnant on febuary 2008 and i was 5 and 1/2 months pregnant and then i had sara on june 25 2008 and i had her for almost 6 weeks and then she passed away augest 8th 2008 and it was the hardest thing that i could do loosing my baby girl it has been almost 3 years since i have lost her and what helped me was my support system my friends and my family also i got a job at a day care and it was hard at first seeing all those babys but it helped and talking to people helps alot too and reading books and just taking each day by day and just remebering teh good times you had with your special angel and remeber that things happen for a reason and it may not make sense at that moment but just remeber if something terrible happens to you that god is very special and he happens to want your special angel its for a good reason my daughter sara is with me everywhere and everyday and she is watching over me and my family and anybody else i know and that she doesnt have to deal with pain or suffering and she is an angel and god is taking care of her and all the other angels up there