Advice for Friends and Relations of Preemie Parents

The first thing to recognise is that this is a very difficult and confusing time for the new parents.

Having a preemie baby may well be the most stressful things that will ever happen to these parents. They may be at once terribly worried, yet fiercely proud and protective of their new baby. The parents will almost certainly need all the support they can get in a whole range of ways.

One thing that many parents in our group have reported is the feeling of isolation they encountered, as

friends and family avoided them at this critical time of their life. The new parents may be preoccupied, worn down, stressed out, overwhelmed with the roller coaster of their baby's struggle - but they need to know that their family and friends are still there.

Our society has not worked out how to deal with the preemie phenomena yet. The advice below may seem contradictory - that means you have to be careful to tune in to how things are going for the new parents before you follow any of it. Different people react in different ways, and every parent and every baby is different. Still, here are some pointers from our group's experience that may be useful.

1. Be sensitive to the emotional strain that the premature birth is placing on the preemie parents. Try not to do anything to make things harder for them.

2. The baby or babies may be very sick, so being too congratulatory can be unhelpful. Acknowledge what the parents are going through and their fears for their baby.

3. On the other hand, many parents in our group report that the lack of recognition of the new baby by friends and family was distressing Even when the baby's outcome is uncertain, parents appreciate gifts such as baby clothes and toys because they recognise the baby.

4. If the parents have other children, do all you can to look after these children, entertain them if that's what they want, comfort them if they are anxious, provide a stress-free haven for them if you can.

5. If you send cards or flowers, be thoughtful. Some flowers look like they belong at a funeral. Cards with pictures of plump full term babies can cause distress. Stock messages are often inappropriate. Blank cards on which you write your own message, poem, something from your heart, will probably be much more appropriate.

6. Be careful not to place expectations or any sort of load on the new parents - they have a great deal to grapple with, and they may not have the time or the energy even to talk to anyone for a while. Understand if they don't call back. They will still be comforted to know that you are thinking of them.

7. If there are any practical things that you can think of which might help the parents, then do them, in the lowest key, most sensitive manner you can manage. If you can mow the lawns, look after pets, clean the house and leave flowers or a prepared meal, it will always be appreciated.

8. Food is a wonderful comforter, and preemie parents need all the comforting they can get. Things like supermarket shopping can be unbearable for parents trying to cope with a baby in precarious health.

9. Find out if its okay to visit, or how the parents want to manage visitors, and follow their wishes. If you are a close family member, you can volunteer to keep family and friends updated on the baby's health so that the parents don't have to deal with so many people.

10. Be there for them. Don't keep away because its hard. Try to stay the distance too - some preemies are in hospital for many months and support from friends and family often drops off over time while the parents are becoming increasingly exhausted with the hospital routine. Often the need for support increases as time goes on.

"The isolation I felt was the worst. The only thing I asked was that someone - anyone come see my little girl in the hospital! She wasn't deformed, she was just tiny."

"Once when [our baby] was having deep troubles my brother just said: "I have absolutely no idea what to say to you." I found his comment honest, complimentary and supportive."

"...the doctors had told us that [one of our babies] would die, and [the local twins association] sent us a card with a picture of two beautiful healthy babies that said, "Congratulations on the birth of your twins". I was so hurt."

"Just hearing "I'm sorry to hear about the baby" wouldn't have seemed right either. I think I wanted to hear "congratulations" but I wanted people to recognize that my son's birth wasn't completely normal either."

"I remember thinking that it didn't matter HOW he ended up, damn it, why weren't people celebrating that he was HERE??? And being really mad at the people who ignored his birth."

"I had been on bedrest for 6 months, but I wasn't prepared. Everyone said "congratulations" to me. No one said "I'm sorry your baby is in the NICU." I really wanted some acknowledgement that things were not normal."

"What I needed more than anything was someone to drive me to the hospital so that I could see my baby each day. I was much too stressed to be driving all the time and I ended up having an accident. It made things so much worse than they already were."

"Everyone and their dog wanted to visit but that meant me getting out of bed post c-section to take them to the NICU every hour on the hour, and the phone rang all of the time, so my sister spent a day in my hospital room beside the phone, and answered all of my calls and read today's update to them all, and met all visitors at the door and asked them to let me sleep and call me the next day for a visit."

You don't have to become an expert on prematurity, but these sites may help you provide support.

Two great resources are Kerry Bone's Understanding Preemie Parents http://members.aol.com/KBone91/understanding.html and Allison & Rick Martin's Support for Coping with Prematurity http://www.comeunity.com/premature/ .

Imagine Site http://www.waisman.wisc.edu/~pittelko/imagine/imagine.htm will give you some idea of what the new preemie parents may be going through.

The Preemie-l Forum http://www.vicnet.net.au/~garyh/preemie_forum/ is a great place to ask questions or to listen in on preemie parents talking about their concerns.

The Early Edition newsletter http://www.vicnet.net.au/~earlyed has many good articles on how preemie parents deal with the experience and how friends and family can help.

We are all human and we all make mistakes. The biggest mistake of all is to not reach out to a friend or family in need because of fear of making a mistake.