Tuesday, July 2, 2013

yay new jersey!

My Nana sent me an article she read in a local South Jersey newspaper. Yes, she physically cut out the article in a NEWSPAPER and MAILED it to me. When she said she was going to I was like, "People still do that? Cute." Anyways, the first line of the article read, "There are no platitudes, no gestures and certainly no laws that will eliminate the suffering of families that have experienced a stillbirth..." Ain't that truth!

The article goes on to explain that New Jersey, my home state, is expected to pass a bill to ease the burden a bit. The Autumn Joy Stillbirth Research and Dignity Act will ensure that families experiencing a stillbirth receive the psychological and emotional support they need. Under this bill, autopsy and laboratory data related to stillbirths would be consistently collected so researchers could then better understand the risks and causes. That information could then be used to advise pregnant women on how to prevent a stillbirth.

"The death of a child is a violation of expectations. But with this bill, families can expect to be treated with sensitivity and dignity." Debbie Haine is the mother behind The Autumn Joy Stillbirth Research and Dignity Act. This is so great that she is fighting for this bill. It is crucial. Unfortunately, Debbie dealt with insensitive treatment in the hospital. She was upset by the lack of compassionate and professional stillbirth standards of care for hospital personnel working with grief stricken families.

I was fortunate enough to deliver in a state where these policies and procedures are already put in place. Evelyn was born in Philadelphia at Pennsylvania Hospital. I could not speak more highly of the people who surrounded me. At first I thought it was a little weird to be in Labor & Delivery but when I think back on my time in the hospital, they treated Evelyn as if she was just like the other babies on that floor.

They insisted on me delivering her, even though I asked for a C-section and to just get it all over with immediately. They didn't take her away right after I had her. They cleaned her off, dressed her up, and kept her in my room until I was ready to see her. At first, I wasn't sure I even wanted to look at her. I didn't know if I could handle it. I am so glad I did though. She looked like a normal sleeping baby.

The nurses made sure I was fed, medicated, and had unlimited visiting hours. They rubbed my back when I cried and held my hand during delivery. I later found out that these nurses volunteer to handle these situations. The hospital recognizes that not every nurse is able to handle the death of a baby. They also recognize there needs be a certain level of sensitivity and respect for the parents as they most likely never saw this coming. Instead of a chaotic, loud delivery room with a baby screaming its lungs out - there is silence and tears of sorrow afterwards. You have to be incredibly strong to stand there and witness that voluntarily.

I also appreciate the fact that further research will be done after a stillbirth. 26,000 babies are stillborn a year and most of the time causes are never known. ANY information I could get my hands on would give me the tiniest bit of relief for my next pregnancy. I am scared to death to go through it again without receiving any answers on Evie's death. I would take even an educated guess from a doctor at this point. How can my perfectly healthy baby girl just...die? No signs of struggle, no signs of infection, no genetic issues as far as they can see. The Autumn Joy Stillbirth Research and Dignity Act will hopefully help prevent stillbirth by requiring research.

Yay Debbie Haine for breaking the silence in NJ!!

5 comments:

  1. You are an inspiration to every person that you meet and every person that can read this blog- xoxo #amazing #strong

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  2. Hi Colleen,
    Thank you for sharing your experiences. I lost my baby boy, Jackson, 5 weeks ago today. I was 32 weeks along and things were going amazingly well... then one day, he was just gone. Hearing what you've gone through helps me to feel less alone and to know that what I'm experiencing is normal and I'm not crazy. Like you, I am searching for any information I can find to understand what happened. My doctor also ran tests on me after I delivered Jackson and found that I have a protein s deficiency, which essentially means that my blood clots more than normal. They didnt find any actual clots, but I believe that this may be what caused his death and it's my doctors best guess. If they havent run these tests for you, you might ask them to. I know how terrifying it is to have no answers, so I just wanted to suggest this. I'm thinking of you and Evelyn today.

    Lacie

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    1. Lacie - first of all, I am so sorry for your loss. At least we all have each other to talk to about it. Thank you so much for your recommendation of a protein test. I will definitely ask my doctor about that. I scheduled an appointment with the Maternal Fetal Medicine doctor to see if they can run further tests, dig deeper into the test results they did receive, and help advise me on what I should be doing to plan for next time.

      you and Jackson are also in my thoughts. Stay strong!

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  3. Dear Colleen,
    I'm so sorry for the loss of baby Evelyn. My husband and I lost our baby girl almost 7 weeks ago, when I was 38 weeks pregnant. We are also in PA, and we were treated amazingly by the nurses and doctors in our hospital. It makes me sad to think that other people would not be treated with the same sensitivity and care. I hope in the future this will change. Sending thoughts and blessings to you and your family.
    ~Abigail

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