After Our Child Dies - What Medical Providers Need to Know (Part III)

To prepare for these posts (Part I, Part II), I reflected back on our experience in the hospital after Isabella died and spoke with others who lost children. Overwhelmingly, families remember interactions with staff and how they were treated rather than details.

We walked away from the hospital amazed by how much our daughter’s short life touched the staff and blown away by the care we were shown by almost everyone. Our nurses, midwife, and doctor mourned with us, sat with us, answered our questions, cried with us, and attended her funeral. Our midwife is absolutely incredible. She brought us flowers the evening Isabella died, held her as we talked, invited us to (and attended) an October 15th remembrance event, sent us a Christmas card, and is now one of my favorite people. Because of the team who came beside us, we never felt alone and will go with the same team for any future children (although we would prefer to introduce future babies to the NICU team without needing to spend time there again).

The stories that continue to cause families anger years later are when they were treated as though their child did not matter, their loss was insignificant, and their questions or concerns were brushed aside. In several cases, information was actively hidden to conceal possible malpractice at the expense of mothers thinking they killed their child. The painful memories involve being brushed aside as staff tended to families whose children were still healthy. The common thread was not being cared for as if their world just shattered, for their lives would never be the same again.

Below is a consolidation of lessons learned following the death of a child. It is what bereaved families want medical professionals to know when they interact with parents whose lives will forever be marked by the death of their baby.

Give us the space to mourn

• As soon as we were handed Isabella as she was dying, the curtains around her tiny bed were pulled and we insulated from the rest of the ward. This privacy allowed us to mourn without feeling on display or seeing other families. 

• While we and our families held her, snacks and drinks were given to us so we did not need to leave the area. We never felt pressured to leave and could stay with her as long as we wanted.

• While our hearts will ache wherever we are, if we are still in the hospital, give us a room far away from crying babies and nursing moms. Seeing others holding their healthy babies is crushing. 

Encourage us to hold our child as long as we can

• Initially, this may feel weird for the parents. We are so unfamiliar with death that many recoil from the thought of touching someone dead. However, bereaved parents have a tiny window of time they can hold their precious child. Let both parents know there is healing and comfort in holding their baby and that it’s not weird. 

• We treasure the hours we held Isabella in a small room next to the NICU. We examined her fingers and toes, looked at her perfect features, held her comforting weight in our arms, and soaked up our daughter. If we hadn’t been encouraged to spend time with her, we would never have made these memories. 

• Many families have their child spend the night in their room and look back with gratitude on the time together. No one ever pictures having their deceased child in their room, but this is the only chance and I haven’t heard of anyone regretting this decision.

• Remember that when we were expecting to hold our child for years, we will never have enough time with them. 

Let us know it is okay for us to touch our child if we want and offer to help bathe and clothe our child

• A friend’s nurse put lotion on her daughter’s skin and she was blown away by how they cared for her, even though her child had already passed away. She holds this memory close and it brought comfort in the midst of sorrow. 

• Give us the opportunity to bathe and dress her. When the nurses gave us the chance, we declined because we were too overwhelmed. Instead, my father gave Isabella her first and only bath.

Ask if we want to change her diaper and show us how

• A friend wanted to change her daughter’s diaper to have at least one chance to do what she thought she’d do thousands of times. Because some of us have never changed a diaper and we also think that it must be different if the child is dead, offer to talk us through the steps.

Call a NILMDTS photographer (Now I Lay Me Down to Sleep)

• When we were initially offered photos, we found the idea crazy, unnatural, and weird. The nurses emphasized that we never needed to see the photos; a link would be sent to us and we could choose to never open it. 

• One of the best things we were told while in the hospital was, “The photographer will be here in an hour.” We were not in a place to make decisions and their phone call took the decision out of our hands. I cannot stress enough the importance of families having photos of their child and no one that I have talked with regrets having pictures taken. Again, there is a tiny opportunity to get photos with our baby and once it is gone it’s gone forever. 

Sit with us and be comfortable with silence

• We know you are human and it’s okay if you cry. (There is also no obligation to cry.)

• We may have questions and need the time to phrase them and to muster the courage to ask them. By just sitting with us, it opens the door for us to ask those frightening questions and begin trying to understand what happened to our child. 

• After the nurses sat with us for a while, I eventually asked, “What did we do to cause this?” When we heard a “stressor” caused the “event,” I assumed I caused Isabella emotional stress and that somehow started the cascade that killed her (Was it a loud movie we saw? Staying up too late?). The nurse’s patience and willingness to answer any and all questions gave me the understanding that I did not inadvertently kill my child. 

Tell me about my child

• I spent very little time with her after she was born, but you had the chance to see her and learn something about her; tell me about her.

• She was beautiful, perfectly formed, had the round belly of a newborn. 

• She was a fighter.

• She has your hands, hair, nose, etc.

• Her eyes were ___ color. 

Put a marker on our hospital door alerting others we experienced a loss

• Our hospital had a picture of a leaf that is recognized by all the hospital staff as signifying loss. That way any staff member who walked in knew we were grieving and this helps stop hurtful comments stemming from ignorance of the situation. 

Do not immediately bind breasts (personal recommendation)

• This was one of the most emotionally painful things that happened to me while in the hospital. This experience ranks right up there with Isabella’s death.

• It felt like my milk coming in was somehow shameful or wrong and needed to be stopped. My body was ready to nourish my child and it was completely unnecessary to bind my breasts mere hours after she died. 

• Give us the options about milk donation and breast binding before we leave, but not immediately after our child dies (and give it to us in writing since our ability to remember is impaired right now).

• In addition to the emotional trauma this caused, I also developed mastitis which felt like getting kicked while already down. 

Know the resources and start to make connections

• You are the front lines, begin to hook us up with the community we never knew existed and desperately need.

• Bereavement doulas can come to the hospital and meet with the families, often was free of charge. They have an array of resources to offer and specialize in infant death. Our bereavement doula was fantastic and we were able to make more informed decisions because of her wealth of knowledge. 

• Most cities have support groups for women who have lost babies, such as Share and others. Know what is available locally. If possible, have a monthly support group at the hospital. 

• Hope Mommies is a phenomenal organization for women who have lost children (miscarriage, stillbirth, infant death) with many local chapters that meet in person. In addition to local meetings, they also have online groups and an annual retreat that I'd highly recommend. 

• Have a list of people you can call who are willing to come to the hospital and talk with bereaved families. A nurse in a different unit who lost a child at 36 weeks talked with us before discharge and met with me later over coffee. Many families who have experienced loss are available and want to walk beside others. 

• Give families a small packet of information. Again, our memories are impaired and we will need to look back at resources. 

Give the family a memory box with their child’s belongings and prints

• We were given Isabella’s blood pressure cuff, wrist/ankle bands, a clipping of her hair, and her prints in a keepsake box. Being able to hold something that touched her is still a balm on difficult days.

Be experts in taking hand prints and hand/foot molds

• While we are grateful the staff made a print of her hand in clay, it did not turn out well. Fortunately, the mortuary was able to make complete casts of her hands and feet and they did an excellent job.

• These molds or prints will have to last a lifetime because we will never get another chance to hold her hands or remember their size.

Give close friends/family who visit a list of helpful things

• No one knows what to do or say, so give families and friends a list as they begin the journey of coming beside grieving families.

Thank you for choosing a career where you know your hearts will be broken as families lose their babies. We are grateful for your selfless love.

Part I - During/Immediately Following Birth
Part II - While in the NICU/Hospital