By: Patti Budnik, Share Bereavement Care Manager
When I started at Share, I didn’t know how amazed and inspired I would be by the families we serve. Everyone’s story is different and there is no such thing as grieving perfectly. Some of our stories are more complicated than others but all result in the loss of a baby. Unfulfilled dreams. Feelings of longing and helplessness.
The truth is after the death of a baby you are a changed person. Happiness and joy come back into our lives but there will always be seasons, dates, and people that remind us of our baby.
I have been pregnant four times, but I labored and delivered three babies. My loss was early at 10 weeks. I didn’t have a labor with my loss. It happened naturally at home. I don’t have a reason it happened. I have no mementos. Yet I still think of the ‘what ifs,’ the ‘whys’ and the ‘what could have been.’ I wonder what my life and family would be like if we did not have the miscarriage.
As a nurse, I have been very blessed to witness many births. I have experienced many long-awaited homecomings from the NICU. It is a true honor to be present at the birth of a baby. It’s something that never could get boring or routine. But it is also something that is not always a celebration. I have been with families when their baby is born still. It is the worst silence anyone can experience. Tears and cries of joy sound different than those of sadness and heartbreak. I have witnessed the pain of parents whose baby died in the NICU. It’s a time where hope is crushed by sadness and death.
When new parents come to a support group meeting, they often don’t realize the stories they will hear. While experiencing the shock and sadness of one’s personal loss, parents hear another family’s story and imagine their reaction and pain as if that was their own situation.
The end result is the same: the death of a loved baby and the need for compassionate support.
I can’t imagine the devastation of going through a labor process knowing that my baby has already died. I can’t imagine being in labor knowing that my baby would die shortly after birth. Each push bringing that time closer to reality. The sound of the heartbeat monitor stopping and then never getting to hear that heart beat again.
I can’t imagine going for an ultrasound excited to see my baby to be told that there is a complication. A terminal or life limiting diagnosis of my baby. A fatal condition. An adverse or critical complication for my (maternal) health. Then while in a state of shock, disbelief and confusion being told to make a decision to continue or end the pregnancy.
I can’t imagine being told to make a choice between my health or my baby’s life. I can’t imagine being in the position to decide if it is time to stop life support on my baby. Yet these are the circumstances that the families we serve face daily.
Pregnancy loss, infertility, stillbirth, or infant loss can affect anyone. These circumstances make us struggle with our beliefs, our faith, and our culture. The decisions made are not easy and the grief and need for support are ongoing.
Healthcare providers, family and friends may not agree with the decisions made. Seeking guidance and support to make the decision can take time and unfortunately, in many circumstances, there is very little time allowed. It can be difficult to fully understand all the information that you are given.
These are controversial topics and many that people don’t realize other families face. Share’s mission is to support those whose lives are touched by the tragic death of a baby through pregnancy loss, stillbirth, or in the first few months of life. Share does not take a political stand on these issues.
Share is not responsible for guiding or counseling families in their decision-making process. We all grieve and mourn for our babies. Some of our parents have had to choose the day that they were going to lose their baby. But the truth is still: each family wanted and love their babies. We all search for support, healing and hope. All grieving parents deserve that.
Part of supporting parents is letting their voices be heard. Parents want and need to share their stories. Through this there is healing, support, and awareness. We will be sharing stories of families that have had to make the agonizing decision to continue or end a wanted pregnancy due to medical complications and discontinuing life support in the NICU.
As a support organization it is always our goal to provide a safe and compassionate place for every family who has suffered this great loss.
We hope this conversation allows for continued healing and an understanding from others of the great need for long-term support for every family making difficult decisions.
Patti Budnik, BSN, CPLC – Bereavement Care Manager
With over 20 years of NICU and Labor & Delivery nursing experience, Patti has seen first-hand the benefits of Share programs both for her patients and for herself as a professional. She joined the National Share staff in 2013 as the primary liaison for the Share Companion program. In her role, Patti provides education regarding standards of perinatal bereavement care and Rights of Parents.