National Premmie Foundation – Family and friends

As a friend or relative of someone who has just experienced the birth of a premature or sick newborn, you might be unsure about how to act. Do I congratulate the parents? Do I offer condolences? Do I avoid them/leave them alone? What should I do and say? Each situation is different and not everyone will react in the same way, but hopefully this information will help you relate to, and support these special new parents.

The birth of a premature or sick baby is a traumatic and emotional event for the parents. They will experience many emotions during this time, such as:

Fear of losing their child and/or long term problems for their baby

Guilt about not carrying baby to term or that they are sick

Anger – why my baby?

Sense of loss of a full-term/healthy pregnancy and the desired type of birth. Loss of experiences like that first hold and being discharged with your baby.

Lack of control/powerlessness. The parents must watch as others take on the role of primary care giver to their baby.

What NOT to do
Avoid comparing the situation to another child/baby’s illness or hospitalization. This only serves to minimize parent’s grief and the circumstances surrounding their situation.

Do not intrude/pry. The parents may feel the need for privacy. This might include not disclosing full details of baby’s condition or treatment. It may also include restricting visitation – parents often feel the need to protect their baby from stress, judgment and intrusions. They may feel the need to keep baby “all to themselves” while their baby is so fragile. Respect these boundaries and the parent’s need for time to bond with their baby and feel like a family. Remember that the needs of the parents come before yours.

Avoid giving parenting advice. Even though you are trying to help, this is not a full-term/healthy baby. Baby will have different needs to every other baby and need special care. Also avoid giving advice about baby’s medical care/treatment unless parents ask for your input.

Avoid abandoning the parents – Stay in touch. You will be able to tell whether or not they want more contact, visits, support, or to be left alone for a while. Respect their attempts to cope and take their lead on the level of involvement they need from you.

Do not place more importance on your feelings about what has happened than those of the parents. It has affected the parents far more than anyone else.

Avoid talking about setbacks that may happen or challenges that baby may face in the future (death, developmental problems, physical disabilities, etc.) If the parents are comfortable discussing these issues, they may bring them up.

Do not expect the parents to attend family gatherings, birthdays, etc. They are already spreading themselves thin while running their household, working and spending time with baby.

Do not visit when sick – Do not visit the hospital or the parents if you are unwell. A virus or infection that you or I can easily fight off may be deadly to a premature or sick newborn. If the parents become sick they will be unable to visit their baby.

How to help

  • Congratulate the parents on the birth of their baby. Give the same attention/acknowledgement to them that you would give to any other birth.
  • Offer to post birth announcement in the newspaper
  • Acknowledge the stress and toll NICU/SCN life can take.
  • Offer positive comments when visiting or being shown photos of baby.
  • Offer to babysit siblings
  • Offer to pass on information to other family members and/or friends.
  • Cook meals for the family
  • Offer to help out with housework, grocery shopping, lawn/garden upkeep, etc.
  • Drive parents to the hospital. Parking can often be hard to find and/or expensive.
  • Offer to keep parents company while they visit baby, or meet them for lunch or dinner.

What not to say
“Didn’t you know something was wrong?”
Comments like these are seeking blame. They will add to the mothers feeling that it is somehow her fault.

“At least you get a full night’s sleep while the baby is in hospital.”
The parents would like nothing more than to have their baby home. Comments like this minimize their feelings and the gravity of what they are going through. Mother may also be expressing breast milk every 3-4 hours, waking and wondering how her baby is, phoning the SCN/NICU at all hours to make sure things are ok, not relishing in a full night’s sleep.

“At least you didn’t get really big and uncomfortable.”
Mothers of premature infants would have loved those extra months of pregnancy for their baby and themselves.

“He/she must be in so much pain.”
This may add to the parents’ feelings of helplessness, guilt and sadness.

“When can I hold the baby?”
Put the parents’ feelings and needs before your desire to be involved, hold the baby and be included. Parents will be very protective and may not want anyone to touch or hold baby. Wait until the parents ask you if you would like a hold of their baby.

“Will they be normal when they get bigger?”
The parents are trying to get through this experience one day at a time. They do not need to be reminded about problems that may affect their baby in the future.

“It must be hard to watch someone else take care of your baby.”
Parents can find it difficult to take on, and feel confident in their role as this baby’s parents, largely due to the fact that someone else is caring for their baby and they cannot take baby home with them. It is a very difficult thing to have to ask to touch or hold your own baby and to have to leave them in someone else’s care every night.

“How do you leave him/her there every night?”
It is heart wrenching, painful and devastating to leave your baby in hospital every night. Try not to make the parents think about it any more than they need to.

“My grief lies all within,
And these external manners of lament
Are merely shadows to the unseen grief,
That swells with silence in the tortured soul.”
William Shakespeare

You cannot make their baby better or take away their pain. All you can do is be supportive and understanding.

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