We are the Spinda family (John, Shanna & Stella Mae) from Murray, KY... on February 1, 2011 at 10:27am our beautiful baby girl, Stella Mae Spinda, was born at 26 weeks gestation. She weighed 12.34 oz and was 9 in long - Stella suffered from Intrauterin Growth Restriction (IUGR) which caused both her extremely small size and her being born premature. Stella spent five days in the Neonatal Intensive Care Unit (NICU) at Norton/Kosair Hospital in Louisville, KY. She passed away late on February 5, 2011 from complications of her extremely small size. This blog was started when she was 23 gestational weeks old and we discovered her condition. It's original purpose was to keep family and friends updated on Stella's journey - we now hope to use this blog as a way to continue Stella's journey by honoring her memory and also as a way to support others who are struggling with infertility or have lost a pregnancy or baby.

Wednesday, July 6, 2011

What I've learned

Yesterday was the five month Angelversary of my beautiful daughter Stella. Somewhere around 7:00pm on February 5, 2011 Stella's Doctor, Dr. Cohan, looked up at me - looked right into my eyes and said "Shanna she is not going to survive this." That event was preceded by about an hour of chaos... beeping machines, doctors and nurses running in and out of her room, etc. When all is quiet and dark in the middle of the night my brain goes back to that exact moment... "Shanna she is not going to survive this...Shanna she is not going to survive this... Shanna she is not going to survive this." plays over and over in my head like a broken record. Right now if I close my eyes, I can still see Dr. Cohen clear as day: he is in jeans and an old sweatshirt (because he was called in when her stats began to fall), with a little scruff like he hadn't shaved since yesterday, but with his honest and kind eyes looking right into mine. At the same time as he was saying those words to me I was remembering the night I checked into the hospital almost three weeks before. He looked at me then with those same honest and kind eyes when he promised that he would do everything he could to save Stella. He also promised that he would always tell me the truth about her condition and if/when all hope was lost he would tell me straight out and allow me the honor of holding her as she passed.



"GIVE HER TO ME!" I screamed. While my brain was still trying to process what was happening I felt this faint sense of relief that I was going to finally hold my baby girl. I was finally going to get to kiss her and smell her. As the doctors and nurses were frantically pulling out her tubes and unhooking her from the monitors I continued to scream... "GIVE HER TO ME NOW!!!" That sense of relief of finally getting to hold her was quickly overshadowed by the panic, rage, and indescribable grief that I was feeling about her loosing her battle with life. I've said it before and any mother or any women who desires to be a mother could probably imagine, holding your child as they take their last breaths is traumatizing. If I knew a stronger word I would use it.

Soldiers in battle are faced with an array of traumatizing and stressful situations, women who are raped have endured a horrifying experience, and even those who have survived a natural disaster can say that what they experienced was traumatizing -- often times these experiences cause a condition called Post Traumatic Stress Disorder (PTSD). I think that because of our nation's history of involvement in wars, we are all very familiar with PTSD. Dating back to the Civil War, there have been documented cases of soldiers coming home from combat with varying symptoms of what we now know of as PTSD. These symptoms include among others, depression, fatigue, disorientation, an inability to make decisions, and a disconnection with one's environment. It seems obvious that a man (or woman) coming home from the front lines of combat would be traumatized by what he/she saw. Even though the recognition and treatment of PTSD in soldiers has been slow to develop it is still more widely excepted in today's society as a genuine medical condition. However, women who lose their babies, especially when the circumstances are particularly traumatic can also develop PTSD. I have learned that this recognition of PTSD is much less accepted by society.

Since losing Stella, I have had several women above the age of 50 tell me about their loss or losses of infant children. Each story has been uniquely different yet sadly similar - they were all told the same thing from the nurses taking care of them: *Hurry up and get pregnant again so you can forget about this baby. And each one of the women who I spoke to told me exactly the same thing: *You will never forget about your baby. At the time, these women were expected to go home and continue their lives as if nothing had happened. There was no time to grieve, no support groups, no talking about their loss. They were expected to go on as if their pregnancy, delivery, baby, and whole experience had never happened.

I have learned over the past five months that what many women experienced decades ago in regards to how others have treated them after their loss, still happens today. Fortunately it happens on a much smaller scale. Today there are nurses who are trained on how to deal with stillbirth and infant loss. They are trained on what to say and what not to say to the women who have experienced a loss. Often times families are encouraged to spend time with the baby after he/she has passed and there are photographers who will come to the hospital and capture those precious hours spent with the baby. There are support groups, online groups, and counselors who specialize in miscarriage, stillbirth, and infant loss. Yet still there are those who are unable to process the experience of losing a child. Therefore they are ignorant in the ways to treat a newly grieving mother.

I have personally experienced a multitude of reactions to Stella's passing. These range from individuals who have stepped up and through actual words and/or actions have told me that they are here to support me, love me, and help me grieve to individuals who have directly or indirectly told me that I need to move on with my life, get over Stella, and stop talking about infant loss. These same people have also compared my loss to their own or to someone that they know. I have learned that as human beings we can actually only imagine as much pain as we have ever been in ourselves. What I mean by this is that if the worst pain that you have ever felt was caused by your dog dying, that is as much pain as you can actually feel that I am in. That is why it is so common for people to compare their grief to another... the pain that you felt losing your grandfather was probably different from the pain I felt from losing mine. The grief that you felt from losing your mother was different than someone else's grief from losing their sibling. Therefore my (or any other women who has had a miscarriage, stillbirth, or infant loss) grief from losing Stella is/was/and always will be different from your losses. It doesn't matter if your loss is of your father, brother, sister, or niece. It doesn't matter if you yourself has had a miscarriage, stillbirth or an infant death. The level of trauma of the experience itself in addition to any other factors surrounding the loved ones lost has a profound affect on how we each as individuals grieve. I do not mean this as a comparison, it is not possible to compare grief of any kind. There are so many factors that surround a person's grief that it is never acceptable to compare your situation to anyone elses. I would never tell a grieving person to "get over, move on, or stop being sad." It is inappropriate and disrespectful to not only form such harsh opinions about someone's grief process but to then communicate those opinions to that person or one close to them.

I have learned a lot about people in these past five months. All of my experiences, good and bad, have taught me to continue down my path of recovery in my own way despite how others may feel or what opinions they may have of my journey. I have been struggling with comments that have been made and actions that have been displayed by others about my loss. I have been battling not only my demons but those of others. I have been too concerned about what others think of me and how they believe that I should be handling my grief. After some time of reflection I have come to the conclusion that I am the only person who can decide how I feel and I am the only person who can decide how I grieve.

Part of my grieving process has been to dive into the miscarriage, stillbirth and infant loss community. I find comfort in chatting with other baby loss mothers, reading their stories, and relating to what they have been through. I have felt a strong sense of responsibility to help others who have experienced a similar loss as soon as I am emotionally ready to do so. And I have learned that no one has permission to judge OR criticize me or my journey!

6 comments:

  1. I am very proud of you for writing how you feel. I have told you before no one has walked in your shoes or you in their's. I love you and will always be here for you. You are a smart beautifull brave women that I am proud to call my daughter. I will always Love you!!

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  2. Shanna, my heart is so heavy. To go through what you have gone through and to find the strength to put it in words takes such amazing courage and so much character. Words have always been so easy for me...until you lost Stella. I find myself grasping and fighting with the keyboard to find a way to express how much I love you and how hard I wish, hope and pray that I could just take some of your pain away, if even for a moment. If I could carry it for you, I would in a heart beat. I love you.

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  3. beautifully written. I really appreciate what you wrote about how all of us grieve differently, even if we both experienced infant loss...thanks for sharing your heart Shanna!

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  4. Another excellent post, Shanna! I'm so thankful you are speaking (and writing) what is on your mind and weighing on your heart! I know you are helping other Baby Loss Mommas cope all while making your Stella so proud of you!

    I call it Post Traumatic Baby Loss Syndrome and unless you've fully experienced it for yourself others can't truly relate to the depths of the pain and trauma. It's a natural reflex for people to try to shield themselves from severe pain, so even when they want to be helpful and supportive their natural instincts don't allow them to fully absorb and understand the traumas we've been dealt and must learn to live with in our daily lives forever.

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  5. I just want to say I am so sorry for your loss. You are deff a strong women. You posted on my wall 'think positive: infertility support' and Im so glad you did. I had two miscarriages, lost 3 babies so far...its been hard. But I know its nothing compared to the pain you have gone through. I also want to say I find it amazing you blog your story, it really helps other mommy's of angels<3

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  6. What a wonderful blessing Stella Mae was to you and your family. Its hard to wrap words around such a powerful moment in your life, you did a wonderful job.

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