Tuesday, April 26, 2011

Stresses and Placental Collection Services

21 weeks + 3 days, 4 weeks + 5 days post rupture.

After my last post I felt a little bad. You see, while this whole experience is hard on me, I cannot forget it is also hard for the people around me who love me the most. Poor Brian. I just wish I could grant him time off. All he wants to do is be at home. His heart is hurting and he's afraid for me and his baby. Instead he has to deal with work, housework, chores, and car troubles (yes, our car is still being a pain in the ass...just what we need at the moment right?). He's doing a fantastic job, but it takes its toll. He's not sleeping much at night and he looks more tired and sad than I've seen him in, well, a year.

My mom is feeling it too. She's been having a few health problems herself lately. Nothing life threatening, but any condition that causes recurrent pain is no fun and gets you down. Now that we've added my current situation, she has sadness and worry for me too. She's taken some time off work and instead of relaxing at home, focusing on herself, she's spending it with me. She's been here the last couple of days getting me water, making me lunch and generally helping keep the house tidy. It's much appreciated and I think she feels better doing those small chores, and keeping me company, than sitting at home worrying about me. But I wish she didn't have to. I wish I could help HER out, since I'm supposed to be the young, healthy, one.

It all gets to be too much sometimes for everyone. Sometimes life is just too hard.

One thing that got figured out today, which made me feel better, is that I spoke to the Program Director at the laboratory which is going to come and collect chunks of my placenta after delivery. As a nurse (and really anyone who works in a field that requires detailed organization), I know how Dr. K. just saying "oh we'll take samples of your placenta after delivery", doesn't necessarily translate into that getting done. I've been the nurse in those situations, where doctors have promised a patient something seemingly simple...and then it takes 3 nurses, 8 phone calls, and mucho paper work to actually get it done. So, being the type A person that I am, I wanted to speak to the person who ACTUALLY does the sampling and ask him some questions. I e-mailed Dr. K. yesterday (who was MUCH more helpful in his responses this time) and he forwarded me to Dr. R.S. the Program Director.

I called Dr. R.S. around noon today at his direct line and he picked up on the second ring (a real person answering the phone?! AND the person who I actually wanted to speak to?! How novel!). He reassured me that he and his colleagues are on call 24/7 and only need about one hour's advance notice prior to delivery in order for them to get to the hospital from wherever they live. They collect the placenta within 30 minutes after delivery (or as close to as possible...30 minutes isn't a HARD rule...it just guarantees the best sample). He e-mailed me the form that clearly lays out the collection team's pager number and I have now printed off a copy to give to the medical staff when I arrive at the hospital. I'm thinking of high-lighting it, bolding it and possibly taping it to my forehead.

Dr. R.S. was very nice, and did assure me that not all placentas they collect come from nicely scheduled C-section deliveries, where everyone knows about it 3 weeks in advance. Some do indeed come from 'unexpected' early deliveries where notice is short. Also he was careful to explain that we need to sign a consent form and that my identity would not be shared beyond the research team. A 'code' will be assigned to my 'case' and I won't be identified. I know from working in research that this process is held in the highest esteem...patients MUST give informed consent. Can't TOUCH them, their information or any of their cast off bits unless they specifically give you consent to do so. I find this a bit humourous because honestly if one of them told me it was required to hack off my left ARM and stand in the street telling everyone in sight about my Breus mole at the top of my lungs, I'd be willing to do it if it could give them any info to help prevent this from happening again or to understand this condition better.

I know that to them my abnormal placenta is a few dots on a slide, tissue in a jar, and a report on a piece of paper. To me it's my baby(ies?) dying, my health in jeopardy, my family's sadness compounded, our future in question. It means so much more to me than any researcher could ever understand. If nothing else, I would like some answers...and a better shot at a healthy pregnancy and full term baby.

Have you ever been involved in a research study?


  1. I am so very glad that you have such a great team willing to look into this for you. Every day you inch closer and closer...

    IT makes sense too about your mom and husband. I think that them helping you helps them, too.

  2. Hi Emily,

    I am the Alphabit addict (sent by email)... Hope you liked it!

    I have both been involved in research studies as a subject and as an investigator. If you have any questions, please let me know.

    Thinking of you and your family...


  3. I had a friend who spontaneously got pregnant with triplets. Two were identical in same sac and a fraternal twin in own sac. Sadly she lost them all around 10 weeks so at the dnc she consented to be a part of a study to further research this rare pregnancy. I am not sure what they all needed or used? I do know she never received any other info though, no follow ups or journal articles,etc.

    Good luck with baby acorn! Thinking or you!

  4. Oh, Emily. Every time I read here I think that you've come so far and through so much, and I wish, wish, wish that this could be easier. Thinking of and hoping for you, Acorn, and your family. You're absolutely right - this affects everyone who loves you, too. But I think being able to do something to help (even if they can't do all they'd like) helps them cope with their fears and sadness, too.

    We didn't participate in a study, though I remember signing release papers so that tissue samples from my pregnancy could be collected for medical research (I don't think anyone used them). I was a little disappointed. I really wanted to be part of a study, since Teddy's condition wasn't all that uncommon, but not much research seems to have been done on prevention. And it would have been a way to fight back against the condition that caused his death.

  5. The fetal surgery that I had with my son Liam was in an 8 year research study that ended the day we called to get into it. We were able to have the surgery still-outside of the study and were also asked to be part of about 5 different studies. I know one was relating to my placenta and the other to the cord but since my baby died in surgery I am not sure if they were able to do anything to help their research or not.
    Thinking of you, Aidan, and Acorn always

  6. I am so glad you got this ready should you need it to be put in place. Cullen's placental path. was critical.. and it is the bass for what my new is RE is evaluating right now.

  7. Glad you were able to get this plan in place - one less thing to worry about! I sent off the Ukrainian eggs to you a couple of days ago. They're packed in tissue in a plastic container - open carefully. Hope you like them!