Be aware that many parents take on the added burden of supporting friends and family rather than processing their own emotions
The DO’s
Mind the baby whenever you can. The parents need all the rest they can get.
Learn as much as you can about CF. Read everything the parents received from the CF team and also from good internet sites, such as www.cfcc.org.au and contact your local CF organisation.
Learn daily CF care, which may include giving the baby enzymes, antibiotics, vitamins and other medications. Most children need chest physiotherapy. Ask your grandchild’s parents to show you how to give enzymes, medications and do/supervise physio.
Understand the importance of infection control and teach other family and friends.
Offer emotional support to help the parents through any feelings of pain and sadness. They may be dealing with denial, grief and fear. You might feel like this, too. While it can be helpful to share your emotions, be aware that many parents take on the added burden of supporting friends and family rather than processing their own emotions.
Make time for the siblings who don’t have CF. They often feel left out or jealous due to the extra care that the baby with CF needs. Give them special time to help them cope with their doubts and fears.
Treat your grandchild with CF the same as you would non-CF children – normally. Be sensitive to their special needs, but don’t be too careful. Children with CF need limits, just like their non-CF peers.
Have your flu shot every year to protect you and the baby. Everyone in the family should do this.
Stay fit and healthy. Get regular checkups and maintain a good exercise regimen so you are a good role model for all your grandchildren.
The DON’T’s
Don’t smoke cigarettes, cigars or a pipe around a baby with CF. Second-hand smoke is bad for everyone – but for small children with CF, it’s worse.
Don’t expose the family to illness – there’s no such thing as “just a cold” in a CF family. Viruses can have a much bigger impact on an infant with CF and might lead to more severe infections for the child. When you visit the family, wash your hands or use an anti-microbial gel as you enter their home. If the family is coming to your house and someone in your house is ill, call them with the option to stay home.
Don’t share horror stories about other people who have CF. Families hearing about those who have died from CF don’t find it helpful. And although lung transplants may extend the life of a particular CF patient, they are not a cure for CF. Think about the impact of a CF-related story before you share it.
Try to keep your emotions in check in front of the parents as much as you can.
Did you know?
Coping with CF is like riding a life-long roller coaster. People tend to offer help right after diagnosis, but the best help is long term.
When the baby is in hospital
- Ask the parents how you can help.
- Call before you visit in case the child or a parent is trying to rest.
- Don’t visit if you are sick.
- Ask about special precautions before you visit.
- Wash your hands when you enter the hospital room.
- Offer to stay with the child so the parent/s can rest.
- Arrange a play date for siblings, who may be feeling left out.
- Help with shopping, washing and cleaning if you can.
- Prepare a meal for the family members at home.
Every child’s CF is different
Some children have mild lung disease, others may be hospitalised often for lung, sinus, liver and gastrointestinal problems. Different factors decide the course of the disease for each person.
Click on Getting Support if you, your partner or anyone else in your family is experiencing anxiety, depression or any other mental health issue. You’ll find a list of helpful resources.
