New diagnosis - CF Buzz

Mixed Emotions

 

If you’re here because your newborn has just been diagnosed with cystic fibrosis (CF) – congratulations on your new arrival!

Whether it’s your newborn, a friend, or an older child that has just been diagnosed you’re probably feeling a little overwhelmed. This maybe the first time you have heard of CF, and so the news is likely to be very confusing.

You’re not alone. Many other parents, relatives and friends have felt the kinds of feelings that you’re feeling now. They’re are often mixed, but completely normal, ranging from anything between confusion, grief, anger, shock, anger, relief and many more.

You’re probably suffering from information overload and it will take time to digest. If you would like to talk to someone, you can call the CFNSW office on 02 8732 5700 and one of our qualified services staff will get back to you.

A brand new baby!

 

Feelings

Grief

Grief is a common feeling after a diagnosis of CF, but it’s a feeling that may surprise you. You’ve not lost your child… but you lost your healthy child, even though the doctor has told you that the outlook for children born with CF now is optimistic.

You would have had dreams and ideas of how you wanted to raise your child, dreams and ideas about their future, their first words, first steps, and first day of school… hold on to these dreams, they can still come true.

 

Guilt

 

“I felt so guilty about not being able to feel good for so long – about two years – then I heard someone else say it took her five years before she accepted it.”

 

Guilt is also very common. Because CF is a genetic condition, parents feel guilty for “giving it to their child”. Many people are carriers of a mutated CFTR gene and unaware of it.

There is nothing you could have done about it, and your child’s CF is not your fault.

 

Relief

Relief is quite natural. You’ve possibly had a feeling something wasn’t quite right, so a diagnosis of CF confirms that feeling.

The diagnosis of CF suddenly provides some reassurance that the crying, hungry little baby that has been hard to settle, or the child that has struggled to grow and gain weight, has not been because you haven’t been trying hard enough or that your parenting skills aren’t up to scratch.

 

“I knew there was something serious there. He kept losing weight and then putting it on, losing weight, gaining it. I was at the doctor’s three times a week for a year.”

 

Don’t feel guilty about being relieved. You’re relieved because now you know what you are fighting – and you will learn how to fight it.

 

Anger

Many events in life seem to have no explanation and no justice. In frustration, many people look for someone or something to blame.

Parents may feel guilty, resent someone’s attitude and become angry. It’s a normal part of grief and dealing with the shock of a life altering situation.

 

“My aunt said she thought it would be a good thing if she died young. I can’t forgive that. My baby was sick but I wanted her to live.”

 

How to handle the feelings

Letting go of the ideal of a healthy child is difficult and only happens little by little.

Grief is a complex group of feelings and is different for everyone. Confusion is normal and you might not understand your feelings, or they could be very clear to you. Your reactions could be strong or they may emerge gradually over a long period of time.

Talking through how you feel can help you to cope with the tumult of emotions you’re probably going through. Think about how you are feeling, and find someone you can talk to about it.

You’ll likely be in shock to start with and not all the information you are given will make sense. Ask as many questions as you like, even if you think they seem silly, all of the questions you ask will help you to a better understanding CF.

Keep a notepad with you and jot down questions as they pop up, write down how you’re feeling, and even write down all the answers you get, you may forget them later in the fog of confusion.

Find out more information on treating anxiety and depression.

 

How do I cope with the shock?

Finding out your child has chronic life-shortening illness is frightening, and don’t worry if takes a while to absorb it. It might take weeks, it could take years.

 

“When they told me, I couldn’t even pronounce it.”

“I knew it was serious by the way they spoke. I didn’t hear anything after cystic fibrosis, not one word sank in.”

 

Will I always feel like this?

Sometimes grief interferes with your ability to enjoy yourself. If your appetite and sleep patterns are affected or you have prolonged bouts of sadness and lack of motivation, you could be depressed.

This may resolve itself as you start to get to grips with CF, but if you continue to have trouble sleeping, to feel like you can’t be bothered doing things you once enjoyed, to have mood swings and/or your eating habits don’t go back to normal, it’s a good idea to have a chat with your GP or clinic team.

Talking to someone who understands and can help you through your depression is valuable.

 

“I felt so guilty about not being able to feel good for so long – about two years – then I heard someone else say it took her five years before she accepted it.”

 

Is it my fault?

Because you are a genetic carrier for CF you may feel responsible for your child’s condition.

Grieving people often feel guilt and need to express it. Talk it over with someone who will listen with respect and not argue with you.

 

“I felt so awful when I found out it was genetic. Of course I hadn’t known, but no one would let me talk. They kept cutting me off and trying to reassure me.”

 

Try to work out and clarify your feelings so that you are able to deal with them.

 

“For a long time I said ‘why me’?” then one day I said … ‘Why not me’? What was going to stop things happening to me?”

Will my relationship with my partner be affected?

This is a time when extra strain could be placed on your relationship.

Accept the fact that you may need support. Talk to a close friend who will listen or contact a professional counsellor to take some of the strain from your relationship.You and your partner may react differently to the news and communication can be hard. Try to be understanding with each other without expecting the other person to know exactly what you’re feeling.

Try to avoid making big decisions at this stage. You already have a lot to cope with and even if you move house or take a holiday, you will be taking this problem with you

Cystic Fibrosis Family

 

What about the rest of the family?

A lot of people start researching their family trees and find infants who died young. Usually they’re deaths will be “unexplained” or due to “pneumonia”. It’s possible they actually had CF, and this knowledge seems to help some families not to feel as if what has happened is a bolt from the blue.

Other family members may be concerned about their chances of having a child with CF or they may be worried about symptoms their children have which resemble CF. Genetic counsellors and doctors with knowledge of CF are the best people to discuss this with.

The reactions of close family members can be a problem. Grandparents, who are often very upset, may go into denial stating the condition doesn’t come from their side of the family.

 

“When our daughter was ten years old I talked about CF with Ian’s Mum. I’d said it all before so many times, but as we sat having a cup of tea together, I think she heard me for the first time. She finally realised it was something from both of us.”

 

Remember grandparents and other family members may experience the same kind of feelings you are and everyone will come to terms with the news in their own way. Some may bombard you with questions, that you’re not ready to answer or can’t. Ask for their patience, and if you feel it might help, take them along to any doctor appointments or clinic days.

Working out a strategy to explain CF and how to deal with attitudes that might cause friction is a good idea.

For brothers and sisters in the 10-14 age group there’s a brochure available from your state CF organisation which will answer many of their questions. You could use it as a starting point for a family discussion.

 

Should I tell my friends?

Telling friends can be tricky for some – discussing problems outside the family isn’t something they’re comfortable with, or they might want to protect their child.

Just like family, friends will react differently, so if and when you decide to tell friends, think about who to tell first.

 

“When I told my best friend about CF after seven years she was shocked that I had kept it from her. But I wanted our daughter to feel she was considered for herself and not for the condition.”

Friends can be a great help in hard times because they are just that little bit removed from the situation. They have a different perspective on it and that can be great help at times.

Friends can also be great advocates and often feel they can help by fundraising and creating public awareness.

 

“It’s really important people know about this, after all, it can happen to anyone can’t it?”

 

Letting friends know can also help your child. They may not feel as “abnormal” or like they have to hide their CF.

 

“I felt the problems of families were not known and that children could suffer from the ignorance. Taking tablets at school is really hard for kids if no one knows anything about it.”

Being diagnosed as a teen or an adult

If you have been diagnosed later in life, there’s a whole set of new complications; suddenly you’re the one feeling confusion, grief, anger, shock, anger and relief. You thought you were healthy, and suddenly you’re not.

Remember that your family will be going through all those feelings as well, and you will need support. Try not to alienate the people around you, you can help each other.

Just like parents of newborns diagnosed with CF, you will feel overwhelmed and have a lot of questions. They may be questions about fertility and relationships, work and study, financial affairs, infections and genetic counselling for family members.

Take it one step at a time, speak to your CF health team and if you need to, find a counsellor to talk to, and remember it’s often easier to talk to someone outside of the situation.

 

Coping with treatment

You will end up with a team of people working with you and/or your child including a dietician and social worker.After a diagnosis treatment is coordinated by a CF professional, usually a specialist nurse or respiratory physician.

CF will change some aspects of your life and you may not want to accept the condition or some of the medical advice you’ll receive. You might even look for alternative ways of treating your child’s condition.

Cystic Fibrosis Medication

 

It’s healthy to have an open mind but it’s also important for your child to receive all the help they can get need to fight CF. The team at your hospital clinic understand your feelings and have experience helping people through them.

Living with CF can disrupt family life as schedules have to be arranged around treatments and medical appointments. This can be a serious problem if there’s more than one child with CF in the family, or if both parents work, and for single parents.

If this is you, don’t struggle with the impossible! There are people you can talk to and services you can use while you adjust to new routines. Whenever there’s extra pressure on the family, there is help available.

 

Where to go for more information

It’s important that the information about CF you’re looking at is up-to-date and reputable.

The internet is a great source of information, but remember to make sure the site you’re looking at is trustworthy.

Ask:

  • Who runs the site and what links does it have to other sites?
  • What’s its purpose and when was it last updated?
  • What’s the original source of the information? Universities, hospitals and government departments are a good place to start
  • How easy is it to contact people for more information? Look for phone numbers not just email forms

 

Where to go for help

General parenting advice:

Australian Family

Raising Children

Coping with the strain on relationships:

Relationships Australia

Dealing with stress, depression and other emotions:

Beyond Blue

Mental Health Online



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