Home > Advocacy, Grief, health professionals, Infant loss, Stillbirth, Stillbirth Awareness, Stillbirth Research > Stillbirth – a description, not a diagnosis

Stillbirth – a description, not a diagnosis

September 14, 2014 Leave a comment Go to comments

This spring, Star Legacy Foundation held our first essay contest! Potential entrants were encouraged to send in an essay explaining what they would like researchers and health care providers to know about their stillbirth experience and what they have learned in their grief.

Jackie Sondrol submitted the winning entry. Her essay was printed in the syllabus for Stillbirth Summit 2014 in June and we are pleased to share it with you again here. Her words speak to many of us.

Thank you to everyone who participated. We hope to share the other entries in future issues.

We wish Jackie hadn’t joined our ‘club’ just as we wish none of us had. But, we are certainly grateful to have Jackie’s passion, dedication, and inspiration working with us to prevent stillbirth.

================================================================================

Stillbirth – a description, not a diagnosis. It is only after influential organizations reach this simple conclusion that we will move forward in research and eliminate this word from 26,000 families’ mouths annually.

I’ve had many thoughts over the past seven months since my son, Aiden, was born silently into this world but the one thought that keeps circling back is; Why?

• Why didn’t I know this was a possible outcome in pregnancy?
• Why didn’t I have the same level of care as an acquaintance of mine that was considered high risk only because she was over the age of 35?
• Why didn’t I have more testing as part of my routine care to monitor my baby’s well-being?
• Why does a mother have to experience a loss in order to receive better care?

All of these questions hold a lot of weight but combined they have the power to change a course of treatment or care but it shouldn’t have to come to this. It’s time providers take accountability for their level of care and work towards preventing/managing risks associated with stillbirth.

I’ve thought about the risk factors associated with stillbirth a dozen times. I didn’t have any; except now that my baby has been stillborn, I have one risk factor that makes me at risk for a stillbirth and not just 3% like I was before but according to one study; an increased risk up to ten fold. Why then, if every expectant mother has the same risk of having a stillborn, wouldn’t every expectant patient be considered high risk? If we do, in fact, have no indicators that a baby is at risk for stillbirth, then why isn’t a higher level of care given to the fragile condition of the baby in the womb and the expectant mother?

I believe; they are looking in the wrong place. The risk factors give providers a guideline to determine if certain women may be at a higher risk than others but, it seems that more often than not, the baby is the one that needs to have their own set of ‘guidelines’ to be monitored as well. How do we prevent/manage something if we aren’t even taking the time to look for it?

It all begins with education and awareness. In the weeks following the death of my son; my nurse told me, “These things usually don’t happen and especially not in the third trimester.” It was then that I knew education was lacking even in the medical field.

This realization was the start of my own awareness efforts. I started Aiden’s Wings of Awareness to bring forth awareness regarding pregnancy and infant loss and to educate others about how often it occurs, needlessly, in the United States each and every day. If even one life can be saved, it is worth every minute.  I challenge you to be your own advocate.

“Every life, no matter how fragile or brief, forever changes the world.”

Advertisements
  1. September 14, 2014 at 4:18 pm

    Thank you, Jackie! This needs to be screamed from the rooftops until medical providers make a change in their standards of care. I suffered a stillbirth loss of our first daughter Mattie in June 2013 at 40 weeks 6 days during labor after a perfect pregnancy, and I feel that our loss could have been prevented with more thorough checks and examinations in late stage of pregnancy. Our only diagnosed cause was a cord compression accident due to her cord presenting before her head in the birth canal and appearing to have been compressed. I feel that if the cord was in this position and affecting my daughter’s ability to get blood and oxygen and nutrients in the last few days of pregnancy, a proper NST could have detected a change in her heart rate that indicated she needed help. Instead, I waited to go to the hospital upon doctor’s instructions until contractions were 5 minutes apart and baby had already passed when we arrived. I was fully dilated. I had not been physically examined in almost a week. Now I am expecting my rainbow baby and have been promised the best and most thorough care and earlier induction, but why does it take suffering a tragedy to get the care we all should get anyway? 😦

  2. Britany
    September 14, 2014 at 4:31 pm

    What you have said is so true. I never understood how lacking the knowledge was among our caregivers until we were expecting our subsequent. I handed my doctor the book written by Dr. Collins and she read it. (She later informed me that because if some if the info in that book it helped her to decide to induce a patient earlier who’s baby looked to be in distress.) I only had to talk to the numerous ultrasound techs who kept informing us that it was simply a “cord accident” ( a term I have come to hate) and have them act as though all of the monitering we were doing with the subsaquent baby was just for my emotional well being. Ug. Thank you for bring light to the change that is needed.

    • September 15, 2014 at 3:28 am

      I had a still born over a pinched cord. & it makes me so angry that they never notice my son was in distress. I had a ultrsound that came Back good in everything the same week i found out my son had passed!

  3. Melina Ceballos
    September 15, 2014 at 3:17 am

    I had my still born son on June 18 2014. I had a miscarriage Aug 4 2013.
    The day I found out I was pregnant with my rainbow baby was the happiest day of my life! I had prepared myself for it so much to make sure I wouldn’t experience that devastating loss agian!
    My pregancy went very well I had no morning sickness. I was just full of joy & love. Until the day I went to l&d for reduced kicks..I found out my son had passed & I had to be induced. I was so confused my doctor told me every visit I was fine. I was anger at him for not taking me more serious. For him not putting his best work into his patient. I pay so much in insurance for what? To be let down to not get the service I deserve! Every mommy to be should have the care & attention they deserve knowing had sentive pregancy can be. When I had my miscarriage I went to doc to doc trying to get help for it wouldn’t happen agian. All they told me. Was that miscarriage are so common & I would have to have 3 before they even consider me high risk! 3 of my kids had to die in order to get the attention I wanted as a mom to be. I took it in my hands n did everything I could to prevent it. Google & youtube became my best friend! Yes it did help & I didn’t have a miscarriage but I expericne something even worse a stillborn! That totally change my life completely. Now that I had to go thur this Iam consider high risk. But the funny thing is even tho I went thur this my doc said it was a case of bad luck in dnt think it will re occur. As soon as he said that i immeditaly Wanted a diff doc! I will not have a doc that doesnt take his Job serious! Now as i go visit my son at his grave i Pray Everyday i wont have to barry another of my kids ever agian in to bless me & all mothers who have loss there kids over preganncy loss have their rainbow babys they deserve! Its a pain that words cant explain!

  1. No trackbacks yet.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: