Losing a baby after birth (including SIDS)

Parents of babies in intensive care often live through long days of waiting, decisions and alarms. When a baby dies there, parents may grieve both their baby and the life they had been fighting for.

You might ask the care team about

• Holding your baby, and skin-to-skin time
• Having family or a faith leader visit
• Keepsakes like prints, a lock of hair or a blanket
• Palliative or comfort care and what it would mean
• Time alone with your baby

If you knew your baby had a life-limiting condition, you may have felt grief long before the death. This is sometimes called anticipatory grief. It doesn’t make the loss any smaller when it comes.

Now I Lay Me Down to Sleep offers free remembrance portraits, including for families whose baby has been diagnosed with a life-limiting condition. Website: nowilaymedowntosleep.org.

A sudden death brings shock on top of grief. Parents often describe a world that suddenly stopped making sense. The next sections explain what SIDS and SUID mean, and what happens after.

SIDS is the sudden, unexplained death of a baby younger than 1. Experts don’t know the exact cause.

SIDS is only used when a death remains unexplained after an autopsy, a look at the circumstances and a review of the baby’s history. It cannot be predicted, is not contagious, and is not caused by vaccines.

One state medical examiner’s fact sheet says these babies appear to die in their sleep, and usually no one is aware of it at the time.

At first you may hear “SUID”, and later a more specific finding, or “undetermined”. Changing words can feel confusing or painful. You can ask the medical examiner or your baby’s doctor to explain what each term means for your baby.

Being questioned while in shock can feel like being blamed. Investigators ask about sleep, feeding and the hours before, because an accurate answer matters for your family.

Things that may help

• Ask for a support person to be with you
• Ask who will contact you with results, and roughly when
• Write down names and phone numbers
• Tell them if you need a break

Waiting for autopsy results can feel unbearable. Some parents find it helps to ask for a contact person, and to decide in advance whether they want results by phone, letter or in person.

An autopsy can rule out known causes, which matters to many families asking why.

Unsafe sleep environments are a risk factor in many sudden infant deaths.

If you now wish something had been done differently, the pain can feel unbearable. Loving parents make the best choices they can, often while exhausted. You loved your baby, and you deserve support, not shame.

Partners and family may say hurtful things in the first shock. These words usually come from pain. A couples or family counselor who understands child loss can help you find each other again.

Replaying the last hours is a very common part of shock and grief. If it keeps you from sleeping or functioning for weeks, tell your clinical provider. Trauma-focused therapy can help.

You may feel anger toward the person who was caring for your baby, even before you have answers. These feelings are understandable. You don’t have to decide anything about that relationship right now.

If you were caring for the baby, you may feel guilt, fear and deep sorrow. Please reach out for your own support. The First Candle grief line is open to family members grieving an infant’s death.

Examples

• “The baby died. Their body stopped working and they can’t come back.”
• “It is not your fault, and nothing you thought or did made it happen.”
• “This happens only to tiny babies. You are safe, and so am I.”

Older children may be afraid or act out. A grief counselor or children’s bereavement group can help.

Grandparents often grieve twice: for the baby, and for their child’s pain. Share offers resource packets for grandparents.

If you were feeding your baby, your body may keep making milk for a while. This can be very hard emotionally. Ask your provider or a lactation consultant about staying comfortable.

Some parents keep the nursery as it was for a long time. Others need to pack things away quickly. Some ask family to help. Whatever you choose, you can keep special items in a memory box.

After a sudden death, many parents check on their other children again and again. This is a natural response to shock. If the fear takes over your days, a counselor can help.

One medical examiner’s fact sheet says many parents raise healthy children before and after a baby dies of SIDS.

First Candle runs a free grief line: 1-800-221-7437, with one-on-one support and referrals to local services. It also hosts peer-to-peer online groups for sudden infant death, stillbirth and miscarriage.

Share Pregnancy & Infant Loss Support offers peer companions, in-person and online groups, and phone and email support. Call 1-800-821-6819.

Things that help

• Check in weeks and months later, not just the first days
• Help with specific tasks like meals, laundry or calls
• Remember the baby’s birthday
• Say the baby’s name

Try not to say

• “At least you have other children.”
• “Everything happens for a reason.”
• Anything that suggests blame