Monday, May 3, 2010

My Project What IF: Step One

In January 2006, I was told I hadn't even been pregnant, despite the 6 pregnancy tests tucked in a shoe box and the two weeks of bliss that followed those second lines. I was confused. I consider myself a relatively smart woman, but being told that I wasn't pregnant threw me for a loop. I turned to the internet and books to help determine exactly what had happened. What the nurse meant was that I had experienced a chemical pregnancy.

I had three more chemical pregnancies that year. I got "used to them" and how things would go, if you can get used to your babies dying one right after the other. But at least the mystery and fear of the physical ramifications was easier to bear. I knew how much blood was normal, what passing the "products of conception" felt like, what to take to ease my cramps.

Then, I had a missed miscarriage in December 2006 and I was back at square one, googling what to expect from my D&C and the recovery. I wished there was someone that I could call, someone who had been through this, someone who could help me nagivate the murky waters.

It was at that time that I told my husband that women needed to be given something when they found out that they were miscarrying (whether a chemical pregnancy, missed miscarriage, active micarriage). I wanted to give them the resources it took me months and years to find.

I would ideally like to have these packets to be given to women at either the ER or their doctor's office. This will all be self-funded, which means that I can't spend a ton of money. I would rather make a phamplet that can refer women to different resources and be able to distribute it widely, rather than make expensive packets that I would only be able to do a few of. Eventually, I would love to be able to give out memory boxes, bracelets, books on loss, etc., but I would have to find a way to fundraise for that. For right now, making something like this will be manageable.

So, here is where you come in. What resources (websites, books, poetries, ways to memorialize your babies, songs, etc.) were helpful to you when you were miscarrying? What information do you wish you had been given along with the bad news that your baby had died or was dying?

For more information, check out my other post on Project What IF. Thank you for your input and support.


Anonymous said...

I think that handing these out would be fabulous. I know I sure could have used one (or many) when I lost my babies. Its never easy and I felt so alone. The biggest help I found was online, in the form of a little paragraph stating that "A mother is born at the moment of conception". I know that isnt much to help you. But lord knows it made a world of difference to me. Still does.

Anonymous said...

I will be interested to see other people's answers.
I would like to see a section about "if this is your third loss".
Things are really different when you go through so many losses. The doctors do not even know what to say to you.

cgd said...

I continue to be in awe of you. This is amazing!!!!
I know my situation was different, but I was referred to a website for women who chose medical termination (as we did with our baby after a fatal diagnosis). It was so helpful.
there is also a web board community for support that you can access through the site.
I will keep thinking and send you other ideas.

Searching said...

I think that would be fantastic. I have to ask how many times moms have been pregnant w/all my admits and new pts and always stop to say I'm sorry for their loss if they say 4 pregnancies and I look around and only see 2 kids. You would be amazed at how many start crying and never had a chance to talk about it, never had anyone acknowledge their loss. Local support groups to meet face to face would be another thing to add under support. I really hope you are able to make at least a few pamphlets!

Anonymous said...

I think it's great that you are doing this...after my son was born, I started making bracelets for patients at my OB-GYN practice who experience pregnancy loss. I asked my doctor to tell them that they are not alone and that there is someone out there who understands and has been there and is thinking of them. The bracelets all say things like "hope" and "loved" and "faith," etc. If/when the women become mothers, they are asked to pass the bracelet along to another patient who could use it.
Maybe you can find someone in your area who makes jewelery and might be able to help out in some way. Or you could include a charm that says "hope" or one of the other words.
(Just recently, I was able to actually meet someone who was given one of my bracelets. I never imagined I would do that and it was one of the most special moments of my life.)


Anonymous said...

After thinking about this for a while, I realized that I still can't come up with a good answer! But here's my best try.

Maybe it's just the geek in me, but I wanted statistics and science. To know that it happens a lot more often than anybody wants to think. That it usually doesn't happen again (insert sarcastic laughter here despite it being the truth). That the process and the recovery differs quite a bit between people and even between your own losses.

And a referral to the blogosphere, with a note about the support you can get from the community, could be helpful. I remember staying silent for months after the first one, trying to pretend nothing had happened and feeling like I didn't belong, until I broke down and emailed a blogger who referred me to other support sites.

Mrs. Hope said...

I don't think I have a great answer, but I think information should be included about how much blood is too much blood (soaking more than a regular sized pad per hour). We had seen a heart beat 5 days prior to my hemorrhage/miscarriage event, and the nurse failed to tell me on the phone that the amount of bleeding I had was a critical emergency - and, despite years of fertility treatments and a prior m/c and ectopic, I didn't know you could bleed to death from a miscarriage. You can. And there's very, very little on the internet about it, and doctors don't think it happens. It happened to me - I went into shock a mere 2.5 hours after the first signs of blood, needed an emergency D&C and two units of blood.

Denver Laura said...

I haven't ever been pregnant so I can't offer any ideas on what to say, but I'm so glad you're doing this. There were so many things said to me by nurses that were confusing, hurtful or just misleading on the whole journey (negative betas, test results, etc.) that I think something that's fact based and reassuring at the same time would help.

Sara Jean said...

"Unsung Lullabies"
by Martha Diamond, David Diamond, and Janet Jaffe

This book was a HUGE help to me.

B said...

after so many losses i'm sure you know all this, but it might help to write a list of what i think might have helped me or might help others:

the fact that for some people it won't just take a couple of weeks to 'get over' - that they will be mourning for weeks or months or even years. that of course, it's not like that for everyone. but that it is for many.

that just because your loss isn't full term, doesn't mean that you aren't grieving the loss of your child.

that you could give your baby a name if you wanted to. that you could hold a ceremony to remember your child (with or without friends and family) if you want to. that even if you don't know if it was a girl or a boy, you could remember your baby by a nickname you gave him or her.

maybe links to sites for memorial jewellery?

that often the mother and father deal with pregnancy loss very differently. that often, because the mother is the one who carried the child, she is the one who grieves hardest and longest and that husbands/male partners don't always understand. but that it's not always that way round - sometimes the male partner (or presumably the non-pregnant partner in a lesbian couple) is the one who grieves hardest.

that your partner should be offered help and support too.

that your due date is likely to drag you down into the depths of grief again.

The book 'avoiding miscarriage' - which is written for those who have suffered miscarriage. it helped me so much - not just in the medical facts it contained, but in alleviating my guilt.

i wanted stats too. they didn't help at all, but i wanted to see them. i wanted to know that my chance of three pregnancies miscarrying in a row is 1%, even though i have no faith that i won't be that 1%. maybe a short section on stats with references for those who want more?

i'm here from LFCA. i'm glad you got there in the end.

oh - and would you also make this available online? i would be interested in producing some copies and taking them to my local hospitals. i would credit you (if you want to be credited!). would you be ok with that?

Anonymous said...

I think your idea is a fantastic one. I'm a graphic designer/web designer and I would be happy to help put this together. Feel free to email me at unicornandi at g mail dot com. :)