Helping the Family After a Cystic Fibrosis Diagnosis

When parents learn their child has been diagnosed with cystic fibrosis (CF), a period of mourning ensues.

CF is a life-long condition that produces thick, sticky phlegm that places a heavy burden on a person’s lungs, intestines, pancreas and other organs.

If you are a blood relative and planning on having children, it would be beneficial to get tested to see if you are a carrier of CF.

It’s also important to shield the whole family from infection. The person with CF is highly susceptible to lung infections which can have a grave outcome. If you’re sick, stay away from someone with CF. People with cystic fibrosis are advised to not allow any sick children into the home.

With a CF diagnosis for a baby comes the loss of parents’ dream to have a healthy child. The parents immediately slip into the stages of grief.

According to Elizabeth Kubler-Ross, the first stage of grief is denial. Denial comes from a psychological inability to accept a reality. Denial is a defense mechanism to prevent the pain of that reality.

(Suggestions for helping the family are taken from the Cystic Fibrosis Association of New Zealand’s Supporting family or Friends Who Receive a Diagnosis of Cystic Fibrosis, unless otherwise indicated.)

The parents in denial voice to themselves and to others that “This just can’t be true.” And they will cite all kinds of information disputing the truth, such as he/she had been an easy baby to carry, so nothing can be wrong; that the baby didn’t arrive too early and the pregnancy and delivery had all gone according to schedule. “How can this be?”, they will often repeat to themselves and others.

Just be there and listen

At this stage of the grieving process, the best a person can do to support the parents is to just sit and listen, give hugs, and perhaps even cry along with them. Family members and friends can give the most support by just being there.

If the couple is religious, having their minster/priest/rabbi or other spiritual leader sit with them can also be beneficial to them. That spiritual guide can offer a level of comfort not generally available from the average family member or friend. If the parents’ religious community has a prayer group, and the couple wants them there, the prayers and support of these folks can also help sustain them.

Ongoing emotional support from those the parents trust is crucial. This painful grieving process can take up to a year to resolve.

While the parents work through the stage of denial and onto the next stage, anger, they also need to step up to the plate and begin caring for their new baby with CF. Their new role as caregivers to an infant with health issues can quickly become overwhelming.

Read on to learn more about different ways you can help a family cope with a cystic fibrosis diagnosis.