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Key points
- The NICU experience is often traumatizing for babies and their parents. Adequate support is a resource that could lessen traumatic imprints.
- COVID-19 neonatal intensive care unit visiting restrictions can limit support for parents of babies who may be seriously ill.
- Lack of adequate support may impose additional layers of trauma on parents.
- People chosen by parents to be present during their baby's transition provide them with connections that may support them after the baby passes.
I witnessed the passing of my grandson in the neonatal intensive care unit (NICU) six days after he was born at 25 weeks gestation during COVID-19. At the request of the neonatologist caring for my grandson, the CEO of the hospital gave permission for the grandparents to be present for a ceremony led by my son and his partner to support and honor their son's transition between life and death.
Our family was deeply grateful for the opportunity to be present and participate. The hospital provided Comfort Care nurses trained in helping babies and families navigate this process. The neonatologist, NICU resident, and social worker were present to support our grandson and family. But it raised the question: How many other families were offered this opportunity or was this unusual?
Ultrasound images capture very little of what a developing fetus at 25 weeks gestation really looks like. Being present with an extremely premature baby allows one to experience close up, how fragile and vulnerable they are on the outside of their mother's womb.
My grandson's physical condition and need to be on a ventilator did not allow for him to be held by his parents during the six days he was in the NICU. They were limited to touching him through the portals in his isolette. They did not hold him in their arms until the day of the ceremony to support and honor his transition.
Mothers experience the felt sense of holding their children inside their bodies during pregnancy. As discussed in an earlier blog post, "Pregnancy: The Experience of Accommodating An Other Within," this experience may evoke a range of sensations and emotions in pregnant women and girls which are shaped by their feelings about this pregnancy, their experiences of prior pregnancies, perinatal losses, fertility challenges, and experiences of abuse and violence that breached their body boundaries. Partners of pregnant women may also experience a range of emotions during the pregnancy shaped by their past experiences.
If extremely premature babies need to be placed on a ventilator, parents may not get to hold their baby in their arms and these babies may not get to be held by their parents until the day they are taken off the ventilator, which may be the day they die. Parents and very seriously ill babies who are being taken off the ventilator so they can transition between life and death may only experience shared skin-to-skin contact for the hours or minutes before they pass. During the baby's transition, parents may feel the weight of their baby on their chest or in their arms for the first and last time.
For some parents, these felt-sense memories can be evoked to connect with their baby after they pass. These memories may help support the grieving process. Some parents may prefer not to hold their baby through this transition.
Due to COVID-19 visitor restrictions in the NICU, I was only able to meet my grandson once for three hours before he passed in his parents' arms. This was my first and last chance to see him face to face, to touch his tiny hand and perfect fingers, to see the fine hair on his head. I noticed his eyelids were closed and realized I would not ever know what color his eyes were.
I had a chance to hold him ever so briefly before he died. The technology that was keeping him alive wasn't enough. It was a futile attempt to replicate and substitute for the incredibly complex living environment that supported his growth and development inside his human mother until he was born at 25 weeks.
The distance imposed by COVID-19 restrictions can isolate parents and their babies in the NICU from their support network. For some parents, the severity of their baby's condition, the overwhelming environment of the NICU, the trauma they may have experienced during their pregnancy and birth, and the physical pain mothers may experience after a cesarean may leave them with little energy to reach out to or connect with their support network. They may be using all their energy to be present with their baby in the NICU, especially if they are told their baby may not survive. If parents choose to connect with their support network, disembodied voices and words transmitted through technological devices may not adequately substitute for being physically comforted, touched, and held in the arms of family and friends with whom they feel safe.
On that one day that I was allowed in my grandson's NICU room, I was a grandmother and a mother. Being present with and witnessing the passing of the son of my son and his partner, I was faced with a glimpse of the multiple losses that would wash over me in the following days, weeks, and months, and the healing that would be necessary.
My son and his partner lost their son. My husband and I lost our grandson. My son's partner's mother lost her grandson. Siblings of my son and his partner lost their nephew. Our family lost the chance to be with this child in our physical bodies, to experience the world through his eyes.
After a newborn baby dies, parents and grandparents may feel they are not acknowledged by others as mothers, fathers, and grandparents. If someone asks if they have children or grandchildren, the answer is not a simple "yes." How does one begin to explain to others who do not know about the loss of their child or grandchild that they will always be a mother or father or grandparent, even though that child has died? It was healing for our family to say out loud "I am a mother. I am a father. I am a grandmother. I am a grandfather even after my grandson had passed."
Current losses may trigger imprints of past losses, even imprints of transgenerational prenatal and neonatal losses. The space and time we give ourselves for processing and healing the present and the past support us in moving forward. We do not know how much time will be necessary to grieve and heal the interwoven layers of our experience and the transgenerational imprints of our parents and grandparents.
Although I cannot physically hold my grandson now, I learned so very much from him during his brief time here and afterward. He has been a gift to our family. His physical body streaked across our physical bodies like a shooting star. He bathed us in love, softened our hearts, came tethered to his umbilical cord, and left us forever connected to him by the felt-sense memory, however brief, of him in our arms.
Coping with the experience of having a child in the NICU and losing that child is one of the most painful and difficult experiences parents can face. COVID-19 visiting restrictions in the hospital NICU and COVID precautions taken by family and friends outside of the hospital when parents come home may isolate parents from the support that could be helpful. Being isolated at this time may add additional layers of trauma that may complicate the grieving process.
Parents whose baby dies in the NICU must adjust to the emptiness of being in their home without the child they had hoped to share their lives with. Mothers may still be recovering from cesarean births and may be coping with the discomfort of stopping breastmilk production. They leave behind the NICU staff who cared for their baby and interacted with them during their baby's stay there, which may have been days, weeks, or months.
It is helpful if NICU staff provide parents with contact information for grief counselors and support groups for parents who've lost children they can reach out to when they are ready. It may also be helpful if staff who were close to the parents would contact them to check on how they are doing in the weeks and months following their baby's death.
In retrospect, my son shared these thoughts about his experience with his son in the NICU: "The opportunity I see is to build support and wide open spaces for parents to follow their own intuition, so that babies can receive the most tender care and love possible inside of an impossible situation. Yes, that looks like parents having the freedom to invite in, or keep out, whomever they wish, and it's also about honoring whatever small knowings that parents feel and express for their children inside the NICU because, at the end of the day, those are the few pieces of that puzzle that are truly human and in service of that tiny life."
