Thursday, August 12, 2010

Understanding

On August 31 I will have the amazing opportunity to speak with local nurses, doctors, hospital personel, pastors, counselors, and social workers about pregnancy and infant loss.

I have been working on this project for a while and it is really happenning!  We will start the morning with a wonderful doctor talking about different kinds of pregnancy loss and then a representative from the state March of Dimes office will address early infant loss and exsisting resources.  Lastly, a panel of parents who have experienced loss will be answering some predetermined questions.  It is our plan for them to specifically share what was least/most helpful after their loss, specific instances they remember that were hurtful, and things we wish others new about pregnancy and infant loss.

It is my hope that we can educate the "first responders" to those experiencing loss and hopefully make a difference in someone's life who may walk down the road we are now on.

So... I need your help.  If there are any Mama's out there who want to be a part of this event, but you are out of state, there is a way you can help.  I need your stories.  If you want to be a part of this project, please leave the following information in a comment or email me at scattercreativejoy at gmail dot com.

*First name, City/State/Province
*Baby's name (if named)
*Gestation/age at the time of loss
*Cause of loss if known
*One thing that was most helpful in the first days after your loss.
*One thing someone said or did that was particularly hurtful.
*Anything else you would like these health care providers to know.

Thank you all so much!!!

Also, please spread the word!  If you can, link this post on your blog and send your readers this way.  I would really like to have several stories to include in something I can give the participants.  Right now, I have 23 professionals registered and this is just by inviting through email.  The information should be hitting the newspapers and radio soon.  We have applied to give nursing and social work CEU's and if we can offer these, I know we will have several more register!

Thank you all so much for sharing your stories and helping educate the community!

11 comments:

Lori said...

This is WONDERFUL!!!!!! I have to say that my doctors/nurses/caregivers during our experience at our very tiny hospital were A.MAZ.ING and I'd love to clone them for everyone that didn't have the same compassion and care I did in the worst time in our lives. I am so glad you will be able to use your pain in such a life-impacting way!!

Lisette said...

This is great, I am so proud of you! I will be emailing you in a bit. I hope this helps so many ((HUGS))

Brandon and Melani said...

Melani

Apache Junction, Az

Baby's name: Evan Matthew Hall

Gestation of loss: 21 weeks

Cause of loss: unknown, I did find out that I am homozygous w/ the C677T in the mthfr gene(they say that wasn't the cause, but I wonder...) :(

Things most helpful: My nurse that helped deliver Evan explained to me that she too has been in my shoes, that helped knowing she new how I felt.
I was also given a care basket upon leaving the hospital donated by a mother in my area who suffered a loss 2 years ago tomorrow. It had a memory box, tiny teddy bear, Evan's measuring tape, a little outfit/blanket he had his pictures in, a booklet with scriptures, poems, songs, and helpful websites. Also my hospital took tons of professional pictures of Evan, that I treasure dearly.

Hurtful things that were said to me: After I left the hospital I realized we didn't tell the nursing staff the name of the funeral home that would be coming to pick Evan up the next day so I called the hospital's front desk, this was our conversation:
Me: Can I be transferred to the maturnity ward please?
RESEPTIONIST: Patient's name?
ME: Well, I actually just left there, I was the patient.
RESEPTIONIST: Did you forget your baby?
ME: Well, ummm...
RESEPTIONIST: I'll transfer you.
I think it was my silence and studdering that gave her the idea that maybe she said something wrong. What I wanted to say is "no, actually he died." I wanted her to feel bad like I did, because of what she said, but I held my tounge because I knew she was clueless, she wasn't trying to be mean.
Then after my follow-up 6 week appointment at my OB, the secratary that checked me out , and after taking my check-out paper, said, "Congratulations!" Again, she wasn't TRYING to be hurtful, I just smiled and walked out. There should be a better system. I was thinking maybe a rose on the follow-up paper work for baby lost mommas like they did on my hospital room door, or a different color of paper even, just something to symbolize that staff would know this wasn't a "normal" follow-up, don't congratulate us. I know of 2 other people this same thing happened to, and it is hurtful even knowing it's out of ignorance.

I think what you are doing is great! We need this for sure! My hospital was pretty awesome under such circumstances, but from other stories I have read, some need a lot of improvement!

rebecca said...

It is awesome you're doing this...I would love to replicate something like this in my area at some point. I'm a social worker myself and have been thinking about ways to make a difference in my community for others experiencing infant loss. I will e-mail you my answers shortly & post something on my blog this week.

justine said...

*Justine, Flemington, NJ
*6 weeks and 12 weeks
*cause of loss not known
*The first time I lost a pregnancy, I had one nurse follow me through until the end of the miscarriage. That was helpful. But they also just didn't seem to by sympathetic. Though they said to "take it easy," that was more medical than it was personal.
*SO many things were hurtful. Doctors who said, "gee, that sucks" at a follow up appointment, then went right on with the exam. Having to go for blood draw after blood draw to follow the levels down to 0, and having no one call to check on me the second time around.
*What I'd like health care professionals to know: while you may not be social workers, you are the first people we talk with when crisis happens, and we need you to be sensitive, caring, compassionate. This means treating us as more than just numbers, realizing how much it hurts to have to wait in rooms full of happily pregnant women, having to leave through that room as we are miscarrying a child, realizing that a follow up call to check on us, an offer of a cup of tea, means more than we can articulate.

Thank you so much for doing this!

kp said...

My name: Kari, Woodbridge, Va.
Baby's name: Melanie
Stillborn at 38 weeks on Sept. 26, 2005 most likely due to a blood clot in the cord.
Most helpful thing that happened afterward: My nurse, who stayed up with me all night long while I cried. It turned out she was my nurse again when I delivered my live daughter a year later.
Most hurtful: Someone said to me, "Maybe it just wasn't meant to be."

Nicole said...

*Nicole - Spring Hill, Florida
*Baby's name - Avery
*Stillborn at 25 weeks gestation
*Cause of loss - My blood tests later came back revealing that I have MTHFR C677T & Factor II G20210A, both blood clotting disorders. Avery died from clots in her cord and in the placenta
*One thing that was most helpful - Having nurses who had previously experienced loss. Their care vs. the care of nurses who hadn't lost a baby was so completely different. They put a butterfly on my door so nurses knew my situation. It was nice to not have to explain it or to have a nurse think I was having a living baby and say something upsetting.
*One thing someone said or did that was particularly hurtful - When my daughter was being taken from the room for measurement and hospital pictures, the nurse put a sheet over her, treating her like a dead body. And she did it again when taking her for the last time. I had wanted to take one LAST look at my baby before she was gone but I couldn't since she was covered by the sheet. The nurse could've waited until she was on the other side of the curtain to cover my baby. That same nurse also gave me a sheet on how to take care of myself and my new baby. It didn't even apply to me whatsoever. Immediately after my daughter's funeral 3 days later, I had a voicemail on my cell phone. It was the hospital, asking if I accidentally took my paperwork home because they needed it for my baby's birth certificate. Someone dropped the ball and didn't tell them my baby died and there was no paperwork and therefore no birth certificate. My photo order form for my baby's pictures had 'Demise' written across the top. Is that necessary?
*Anything else - It would help if we were told more things we're not aware of when we're in such pain. Suggestions of things we may want to do while we have our baby in our hospital room. I wish I'd brought an ink pad to make extra hand and foot prints. The hospital should have specific things for loss. I felt like I was a rare case that was barely catered to. I wish the hospital had contacted 'Now I Lay Me Down to Sleep.' I feel like it was up to me to be prepared for the unexpected. I felt alone, given no resources at my departure.
It would be AMAZING if doctors could test for blood clotting disorders BEFORE it kills our babies. Stop testing me for STDs and test me for something that I actually have.

Nicole said...
This comment has been removed by the author.
Holly said...

This is really awesome!!!!

*Holly ~ Lees Creek, OH
*Baby's name: Carleigh McKenna
*37 weeks
*anencephaly/stillbirth
*Helpful things: One of the things that always stands out to me is that during her first visitation I was surprised with a bracelet with her footprints, name, and birth date on it. It meant so much to me and I put it on immediately. At the time the person was a stranger to me but I know call her a dear friend. It felt amazing to know that someone had thought of me and my baby to give me such a precious gift.
*Hurtful things: It hurt me to have my loved ones try and tell me how I should be grieving when they had no idea what it was like to lose a child.
*I think it is very important for professionals to show compassion to grieving families. I was so thankful for the great care that we received when we were in the hospital. They laughed with me and smiled with me and also cried with me. Many times parents are caught off guard by the death of their child. We knew months ahead of time our baby wouldn't live so we had time to prepare. Those who care for these families should make suggestions like getting prints and taking photos. I know my hospital will even do these things and hold them if the parents don't want them in the case that later they might. I think it's really great that they do that.

Melissa Joy said...

*My name: Melissa Joy in Washington
*Their names: Covenant Hope; Glory Hesed; Promise Anastasis; Peace Nikonos; Mercy Kyrie; Victory Athanasius.
*7 weeks; 5 1/2 weeks; 8 weeks; 7 weeks; 11 1/2 weeks; 7 weeks.
*Likely due to a host of immunological problems (MTHFR homozygous, PAI-1, hypothyroidism, low progesterone, hyperactive NK cells, no antipaternal blocking anybody).
*Helpful: when someone says "I don't know what to say" or "I am so sorry". From husband to friend to doctor, there is nothing worse than someone saying the wrong thing. Admit that you don't know what to say, you don't understand how it feels. Don't try to fix it - grief can not be fixed, it must be lived.
*Hurtful: When anyone (this has been doctors, in my experience) downplays a first-trimester death. These are my *children*. Call it a *baby*, for pity's sake! And when you actually take the time and look at my paperwork, yes, you will see that I have been through this half a dozen times, so please don't treat me like I am clueless. I know way more about miscarriage and grief than you possibly could.
*If I ask to be allowed to wait in a separate waiting area (hallway, for instance!), please allow me. If I am sobbing through an ultrasound, please don't ask me to stop so you can get on with it. If I need my husband to come in the room with me, *let him* - no matter what the procedure is. If I want to stop and pray before an appointment, allow us. If I want my baby's name written on the paperwork, don't tell me "we don't write the name, we write embronic blah-blah-blah." Also: please know that I pray for you, that I pray for the doctors and nurses who work with me; that you will have grace, that you will see my faith; that you will have the gentleness to let me grieve. I am not a patient: I am a bereaved mommy. Six times over.

Heather said...

This is just soooo great! I have posted the info on my blog, so hopefully some people who don't already know will stop by!