Advice for Family & Friends
Many people are really unsure of how to support their family members or friends when a baby is born prematurely. Whilst everyone situation is different, it is so important to acknowledge the new arrival, even if the baby's life may seem in jeopardy.
The new parents are probably in shock and in some cases disbelief. It is a very strange experience to be pregnant with many weeks or months still to continue one moment and then to deliver your baby the next. Depending on the baby's gestation and health, he/she will be taken to a NICU or SCN for immediate medical assistance. The new Mum may not have held her or even seen her baby until she returns to the ward after delivery. She may want to be the first person to see the baby so it is always dvisable to ask the staff or new dad if it is okay for you to be in the Nursery. Usually visitors can only be in the nursery with or with special permission from the parents. Each Nursery has it's own specific rules about things such as numbers of visitors and handwashing. The family will be informed of these rules but is it helpful if you can ask staff also.
The following information is an excerpt from a document written by the President of the National Premmie Foundation -
For Family and Friends
As a friend or relative of someone who has just experience 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. A premature 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 gathering, birthdays, etc. They are already spreading themselves thin while running their household, working and spending time with their baby.
Do not visit when sick – even a 'simple cold' can lead to serious setbacks or even death in a comromised infant. 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 their 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.
Practical tips and information
Put together an expressing kit to take with you wherever you go. Include sterile bottles/containers/jars, shields, valves and tubing for pump, baby’s hospital labels and a pen. This can all be kept in a cooler/insulated bag, ready for use. Don’t forget to take your electric or hand pump with you if you are going to need it.
Ask the nurses to take foot and hand prints if baby is stable enough to do so. When baby is stable enough, it is a great idea to have hand and foot casts/impressions made. You will be surprised at how fast they will grow!
Start a journal/diary about your baby’s NICU/SCN journey. You can include information daily about baby’s condition, medications, weight, and other circumstances and events such as coming off a ventilator, graduating to a hot cot, operations needed, first bath, first breastfeed or suck feed, etc.
Talk to other parents in NICU/SCN. You will probably be surprised at how many parents want to share their experiences and feelings with others who are going through the same thing. You can build friendships and support each other.
A frozen meal for lunch or dinner makes a good ice pack for transporting EBM to the hospital.
Dress your little one in their own clothes if the unit allows it. This may not be possible until baby is stable enough and provided clothing doesn’t interfere with leads or lines.
Decorate baby’s incubator if the unit permits it.
Take video footage as well as photos
Invest in a good hand cream to combat dry, cracked hands.
Do whatever you need to to feel OK and if that means calling up the hospital at all hours, so you can sleep a little better, do it. You might be up expressing anyway!
Celebrate every step, every milestone, with photos, cards to baby, video footage, even a cake.
Don't be afraid to do your little one's cares.
Keep asking for kangaroo cuddles if your baby is stable.
Have hand sanitiser in your purse, for all the times you touch elevator buttons, eftpos machines, hand rails etc in the hospital. You need to take every measure to not catch a cold, because it is cruel to be at home and not be able to visit your child.
If you are expressing, the expressing room is a great place to meet other mum's. Even if you are shy, it's really worth it, and before long you won't even realise what you are doing.
Take care of yourself, eat lots of healthy snacks, drink lots of water.
Read stories to your baby, they know your voice.
If you don't understand what a Doctor has told you, ask them again, and again, and again until you understand, and then the next day and the next day when you've forgotten.
Take your own coffee cup and cutlery to use for lunch
Educate yourself, read books on Premmies, surf the internet
Ask to keep old leads, arm bands, phototherapy masks, etc.
Most importantly, don't blame yourself, let go of the guilt
Photography tips & handy hints
Light/flash reflects of the Perspex/plastic of the incubator. Have the side or top open if possible.
Many units have a digital camera. Ask nurses to take photos of any significant or special moments that happen while you’re not there.
You can put mum or dads wedding band on baby’s arm as a size comparison or use something else next to baby to show how small they are. A tennis ball or a toy that will be kept as a special keepsake is areat comparison photograph also.
Take photos while doing cares.
If baby’s bedding needs changing, ask if you can put your hands in the incubator and hold baby up in your 2 hands while the sheets/blankets are changed – this makes as beautiful photo.
Lea Tidyman. NPF President 2008.
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