When a Baby Dies

by Debbie Haine Vijayvergiya
Stillbirth Parent Advocate • Founding Member of The Action for Stillbirth Awareness and Prevention Coalition • Founder of the 2 Degrees Foundation Fund

I won’t lie, I cringe when I think back to how frustrated and concerned I was when after two months of trying, I still wasn’t pregnant.

A friend had recently told me how she achieved pregnancy success with the help of a pricey fertility monitor so I tried that and luckily for me, I found out I was pregnant soon after.

My first pregnancy and delivery were the definition of text book. My post birth complications, which consisted of a late presentation of Group B Strep, C. difficile, and a blood clot, were not in my birth plan BUT I quickly made peace with it. I refused to allow myself to be consumed by my unexpected hospital stay or my lengthy recovery period ahead of me. I had a beautiful baby girl to focus my energies on; I would heal and get better; life was good.

I didn’t have a problem getting pregnant after that. Actually the opposite happened. When we weren’t trying; I would get pregnant. After two miscarriages, the second which occurred after a two week period of bed rest, ended in an ambulance ride, D&C, and 10 hour ER visit, I didn’t think much worse could happen. When I became pregnant for the 4th time in four years I was very anxious, but by the time I rolled into my 2nd trimester I was able to settle into the excitement of being pregnant and was finally able to feel confident that we were in for smooth sailing. At that point I had convinced myself that I had paid my dues to the pregnancy gods and nothing else could go wrong.

Unfortunately that wasn’t the case. During a routine 2nd trimester checkup my obstetrician could not detect my baby’s heartbeat. It was any expectant mom’s worst nightmare. Nothing can prepare you for the moment you find out that your baby is laying lifeless inside of you. Nothing. My life has never been the same since….

Unbeknownst to many, stillbirths cause approximately 24,000 deaths a year in the United States resulting in approximately 2000 babies dying each month – more than deaths resulting from SIDS and prematurity combined. Even with numbers like these, stillbirth remains one of the most understudied and underfunded public health issues today.

I was completely overwhelmed and unprepared to handle the unthinkable tragedy that I was facing. And I quickly learned I wasn’t alone. Soon after I was admitted to the hospital, I realized that the hospital staff – doctors, nurses, psychologists and social workers – didn’t always know what to say or how to say it. In retrospect I realized that many were lacking the tools needed to handle stillbirth. It seemed that my nurses found it difficult to switch gears between the “lively” hustle and bustle of the Labor & Delivery floor and the “barren” dark hole that my room signified. I felt neglected by my nurses. Not once did any of my nurses stop to see how were coping. I felt like a leper; as if my stillbirth was contagious.

With that being said, if I take a step back, I completely get it. The death of an unborn baby is completely out of most people’s comfort zones.

Nurses play such an integral part of the recovery process; it is critical that they are provided with the most relevant and appropriate training. In my case it would have made such a difference in my journey if the nurses were better equipped to handle the delicate nature of my experience while in their care.

There’s no such thing as one-size-fits-all advice on how to help a family suffering through a stillbirth. But what I can suggest to a nurse faced with a patient (or family member) who is struggling is to not be afraid to find the empathy and compassion that is needed to address the situation. Nurses are some of the most caring people on the planet – they went into one of the hardest and most caring professions out there. That said, even the most caring people benefit from refreshers on the effective and sensitive responses when patients have difficult circumstances. There is a lot of pressure to offer up the perfect words that will make the family “feel better” but the truth is, just being a caring presence is what is most necessary.

Stillbirth is a taboo subject across all levels of society, but if we work together to break the silence and remove the stigma around stillbirth, we will be better equipped to further the care needed to improve stillbirth outcomes for all involved.

There are many resources for nursing and parents including:

• Star Legacy Foundation
• First Candle
• The Action for Stillbirth Awareness & Prevention Coalition
• The Wintergreen Press & Babies Remembered
• 1st Breath
• Open to Hope
• Now I Lay Me Down To Sleep
• The Kelly Ryan Foundation
• The Tears Foundation
• MISS Foundation
• The Compassionate Friends
• Share Pregnancy & Infant Loss Support

Additional Resource Lists

• http://nnekahallunhinged.weebly.com/infant-loss-resources.html
• https://www.nowilaymedowntosleep.org/families/family-resources/agencies-and-organizations/
• http://www.hopeafterloss.org/support/resources/
• http://stillbirthday.com/birth-plans/

Some Helpful Tips from a Mom to Nurses

• Acknowledge their loss; tell the grieving family that you are sorry for their loss.
• Be patient with them.
• Refer to the baby by their name, if one was given.
• Make yourself available to the family if they want to talk
• And if they do want to talk, listen to the family. Don’t feel like you need to have a response.
• Let them cry, offer tissues.
• Please continue to be patient.
• Wait to talk about “arrangements” until after labor and the family has some time to let their new reality settle in.
• Continue to offer to the family the option to hold the baby, any sort of mementos, pictures such as Now I Lay Me Down To Sleep
• Please be respectfully persistent. Don’t give up. The family may say they don’t want pictures, a memory box, or to hold the baby- but that could change. There are no “do-over’s”.
• Please make sure that all hospital staff that enters the mothers room is aware of the situation and are sensitive to it.
  It’s ok to not have the answers; no one is expecting you to.
• Please don’t say- “sometimes these things just happen” or “you’re young, you can have more”.
• Please encourage them to consider a perinatal autopsy or additional extensive testing. It is in the best interest for them with regards to subsequent pregnancies and for the future understanding for us to understand why stillbirths occur and how we can begin to improve outcomes.
• Never forget to validate their feelings.
• And one of the most important things you can do is to reassure the mom that they are not at fault. I can assure you, they are blaming themselves and you have the power to take that weight off their shoulders.