People with cystic fibrosis are living longer, healthier lives than ever before. As a result, starting a family is a reality for many people with CF.
There are some challenges but thanks to advances in reproductive technology, many more people with CF are able to start a family. We’ve provided some basic information, however family planning is very personal to you and many of your important questions will need tailored answers.
For some couples, finding out the likelihood of your baby having cystic fibrosis might be what gets the ball rolling.
To be born with CF, the baby needs to have two copies of the faulty gene that causes CF. The baby will definitely receive one copy from the parent that has CF; whether they inherit a second copy depends on the carrier status of the other parent and the chance of them passing the gene on.
Find out more about the genetics of cystic fibrosis
Most men with CF will not be able to father a child biologically without assistance from fertility specialists. This is because the tiny tube which carries sperm (called the vas deferens) is missing or blocked. The sperm however is normal in 90% of men with CF, so conception is still possible with assistance.
IVF and a procedure called ICSI (intracytoplasmic sperm injection), where a tiny needle is used to extract sperm directly from the testis and injected into an egg, has been successfully used by many couples in the CF community who do qualify for publically-funded IVF/ICSI.
If you are considering starting a family it’s best to discuss this with your CF team.
Many women with CF have babies and they all have different stories and experiences. Most women with CF are able to conceive naturally, however it may take longer to become pregnant due to thicker mucus making it difficult for the sperm to fertilise the egg. Some women may require IVF to have a baby.
When planning a family it’s important that you speak with your CF team to discuss what impact a pregnancy might have on your health and what you can do to best support a pregnancy.
About 1 in 625 couples in New Zealand are both carriers of the CF gene and often only discover this when they have a child with cystic fibrosis. It’s not uncommon for these couples to consider different options for having another baby, for example using IVF and pre-implantation gestational diagnosis (PGD), also known as prenatal diagnosis (PND). This involves IVF and screening the eggs for cystic fibrosis before implantation. Each couple who meet the criteria are eligible for two IVF cycles unless they have a baby born following the first cycle.
If you're interested in exploring whether or not PGD is a good option for you, please ask your GP to refer you and your partner to Genetic Health Services NZ. There is a long waiting list in New Zealand for publically-funded IVF.
The New Zealand Genetic Health Service has also put together some information about PGD. The Cystic Fibrosis Trust in the UK has produced an in-depth fertility information pack which focuses on some of the issues men and women with CF face when starting a family.
You can also talk to your CF field worker about fertility issues and IVF treatment.Meet our field workers