By Alison Ferrera
As I write this I am acutely aware, as I always am, of exactly how long I have lived without my daughter. Six months and twenty days as of today. It should be getting better, right? No.
As time goes on, I have found that people know so little about this type of loss. I was prepared by doctors and counselors for the intense depression, the aching arms, the anxiety, and emptiness. I was never warned about the nightmare, the flashbacks, the inability to plan for the future (even next week), the appetite changes, panic surrounding certain events, and desire to isolate. As I struggle with all this, I realize many other loss parents may be struggling with the same things. So I started doing some research. I wanted to know if this happens to many loss parents. The answer is yes.
I think some people, maybe many people, think that the grief after infant loss should be less intense then the loss of an older child, spouse, parent, etc. due to the short time the child was in your life. However, as all of us that are on this journey and those that are closest to us (the ones who have the courage and compassion to really ‘see’ us) can say with absolute certainty, this is so far from true.
I could list hundreds of reasons why the grief after pregnancy or infant loss is so intense and complicated. I could talk about missed milestones, the huge shift your role in life takes, and the extreme heartbreak of death occurring ‘out of order’ in a family. But I think we have all talked about that before. What you, as a loss parent or the supporter of a loss parent, may not know is that there is research to support our level of grief.
The grief surrounding the loss of a first-degree relative has been shown to decline slowly over the first 12 months post-loss, whereas the ‘normal’ grieving process surround pregnancy loss does not decline until after two years have passed, with one in-depth study finding 59% of parents were still struggling with grief symptoms at a high rate of occurrence after those first two years. Other grief specialists estimate the average grieving process for pregnancy/infant loss to decline after 4 years have passed. Researchers have also found that parents who have no living children at the time of the loss have longer, more complicated, grieving. And of course, all the experts seem to agree on one thing across almost all loss parents: the grief may decline (meaning less impact on your daily living) but it is still always there. Always.
A piece of this complicated loss that is not addressed nearly enough, is the high rate of Post-Traumatic Stress Disorder (PTSD) in loss parents. Research has found that up to 40% of mothers and 15% of fathers who experience pregnancy/infant loss develop PTSD. Though gestational age in cases of miscarriage does not seem to affect the likelihood of developing PTSD, rates of PTSD are higher among parents who were far enough along when delivering their child to be able hold them, and highest among women/men who saw their child die (after being born alive).
Loss parents are often not being treated for PTSD, even if they are open about their symptoms, because their family, friends, and even doctors dismiss the symptoms as ‘normal grief,’ depression, or, worst of all, exaggerated attention seeking behavior. If you have PTSD following the loss of your child, there is treatment that can help, and your treatment should be tailored to PTSD rather then just depression or grief. The first step to getting treatment is recognizing the signs of PTSD in a loss parent.
Some of the most common symptoms of PTSD in a loss parent are:
- Hyperarousal: Irritable, unable to sleep, always on alert
- Emotional Numbing: Feeling detached from life
- Avoiding Triggers: Any reminder of the loss; such as babies, baby showers, parties for children, hospitals, stores where you registered, etc.
- Isolating: Social withdraw, unable to attend social functions, difficultly maintaining relationships
- Flashbacks: Reliving the trauma
- Nightmares: About the trauma, possible future trauma, or event surrounding it
- Difficultly sleeping, eating too much or too little, loss of interest in activities you once enjoyed
If you notice these symptoms in yourself or someone you are supporting, it is time to advocate for a thorough evaluation for PTSD and proper treatment. A PTSD diagnosis does not mean you are weak, that you are grieving the wrong way, that you did something wrong, or that your grief can never be overcome. There is help, and it can get better. I, myself, am just coming to terms with having a PTSD diagnosis and starting treatment, but I know from others that is does get better. Don’t give up strong mother or father!
References:
Davis, D. L. (2016). Empty Cradle, Broken Heart: Surviving the Death of Your Baby. Golden, CO: Fulcrum Publishing.
Traumatic Bereavement and PTSD. (Jul 08, 2018). Traumadissociation.com. Retrieved Jul 8, 2018 from http://traumadissociation.com/traumatic-bereavement-ptsd-and-loss-of-loved-ones. Read more: http://traumadissociation.com/traumatic-bereavement-ptsd-and-loss-of-loved-ones
Kersting A, Kroker K, Steinhard J, Lüdorff K, Wesselmann U, Ohrmann P, et al. Complicated Grief After Traumatic Loss. Eur Arch Psychiatry Clin Neurosci. 2007;257: 437–443. doi: 10.1007/s00406-007-0743-1
Christiansen, D. M. (2017). Posttraumatic Stress Disorder In Parents Following Infant Death: A Systematic Review. Clinical Psychology Review, 51, 60-74. doi:10.1016/j.cpr.2016.10.007
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Alison Ferrara is 27 years old and lives with her husband, dog, and two cats in Lititz, PA. She is a behavior consultant who works with children diagnosed with Autism Spectrum Disorders. Alison is mother to Miriam (Mira) who was born on December 18, 2017. Alison carried Mira to terms after she was diagnosed at 18 weeks with fatal birth defects. Mira lived for 53 beautiful minutes. Alison maintains a blog to share Mira’s story and hopefully help end some of the silence surrounding infant loss (babyferraraM.blogspot.com).
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Allison thank you for writing and for recognizing that PTSD is a huge part of infant loss and bringing it to light . I have watched what my son and daughter-in-law for over 2 years now .. have gone through since losing baby Harker at 39 weeks still born . I have never witnessed grief and loss like this . EVERY thing you wrote they have gone thru … The isolation, anger all the triggers like the baby showers … Friends having babies . It’s horrific and as a grandmother I grieve for my grandson but also for my son and daughter in law knowing they are not the same people they were . This has truly been life changing and earth shattering for all of us . My son identified the PTSD early on after Harker died . He talked about the night mares .. fear to make plans ….this is so very real . Thank you for bringing this to light . People really don’t understand unless they have gone thru it personally . I’m so sorry that you lost your precious daughter .
My baby was 13 months old when she way taken. All symptoms are present but the problem is people around me keeps telling me to accept it and move on. I tried doing it I am having panic attacks when I am alone and didn’t recognize that I already cried for hours. Sometimes when I am talking to someone I didn’t know that I suddenly stop in the middle of talking. I am trying to fight for it and be strong but they kept telling me that I am not helping myseld.