Thanks to advancements in cystic fibrosis care and research, more adults with CF are considering starting families. Although parenting is not for everyone, it is important to understand that having kids is a very real possibility for people with CF if it is something they wish to pursue. The decision whether to have kids is a highly individualized one, and largely depends on your own situation and goals.
For some, having a child that is genetically theirs is important, whereas others may focus on alternate family building options or aspects of life beyond having kids.
"Right after our wedding, the questions started. 'When are you having kids?' people asked. 'How many kids do you want?' … But here is my question to them: 'Why do I have to have kids?' The answer is that I don't, and neither do you if you choose not to." — Dana Curry, adult with CF
Although there are certain factors that any future parent must consider, these factors are often more complicated when you have CF. For this reason, discussing key family planning considerations with your partner, spouse, family, friends, or CF care team is an important first step toward deciding whether having children is right for you.
Key Questions and Considerations
In addition to standard questions that any prospective parents should ask themselves, there are some family planning considerations specific to CF, such as:
- If you have a partner or spouse, would your partner be capable of raising a child alone if he or she were to lose you?
- Have you and your partner or spouse discussed how you will split childcare responsibilities? Is he or she willing to take on a bigger parenting role -- particularly in the first two years after the child is born or if your health were to decline?
- Do you have a strong support system, such as family, friends, or a community that can step in and help? For example, having reliable people to call on when you or your child is sick or you have to be hospitalized can provide both you and your partner peace of mind.
- Is raising a child consistent with your lifestyle? How would your daily life change and are you willing to make the compromises?
- If you plan to have a child through an alternate family planning method, can you afford it? Adoption, surrogacy, and in-vitro fertilization (IVF) can be expensive, and some services may not be covered by your health insurance plan.
- Has your partner, spouse, or donor been genetically tested? If he or she is a CF carrier, would you be able to manage two treatment plans if your child were to inherit both copies of the defective CF gene?
All people need to weigh their realities to achieve their life goals, whether it be a career, marriage, living abroad, or having kids. Your reality to weigh may be your CF, and it may be other factors as well; all you can do is be honest with yourself and start planning by addressing the important implications ahead of time.
Consult with your care team, listen to your body, assess your priorities, and be thoughtful when deciding what tradeoffs you are willing to make based on the quality of life you want and your personal goals.
Watch the video below to hear an adult with CF and Mike Boyle, M.D., FCCP, discuss:
- What to consider when thinking about starting a family
- Evaluating your health
- The importance of partnering with your family, friends, and CF care team
Assessing Your Health and Family Planning Options
If you decide that you would like to start a family, you will need to gather information and assess your health to identify what your family planning options are.
For Women With CF
If you are a woman with CF, are you planning to have a child through pregnancy? If so, it is important to understand that women with CF with good lung function and nutrition are in the best position to become pregnant and have a healthy baby.
If you or your care team are unsure about your ability to carry out a healthy pregnancy, then you may consider other family-building options. Although alternatives including adoption, IVF, and surrogacy may help maintain your health, they may also come with important tradeoffs.
Hear parents with CF and Mike Boyle, M.D., FCCP, discuss:
- Other ways to have a family
The decision about how to build your family is often as individualized as the decision to have children itself. Every experience is different, so gathering the necessary information, assessing each option in relation to your individual needs, and having open discussions with your CF care team, partner, family, and friends are key.
For Men With CF
For men with CF, having biological children is possible, but will often require assisted reproductive technology (ART). Because 97-98 percent of men with CF are infertile, most will require a procedure in which a urologist makes a small incision in the scrotum to extract the otherwise absent sperm. The extracted sperm can then be used to fertilize an egg through IVF.
Although the process of becoming a father may not directly impact your health in the same way that pregnancy does for women with CF, there are still important factors that a man with CF should consider before starting the journey toward fatherhood.
Many ART procedures, adoption, and surrogacy can be expensive and will generally not be covered by your health insurance. However, you should contact your insurance provider first to make sure that you know exactly what will be covered and what you will be financially responsible for.
You will also need to think through the genetic implications of having a child as a man with CF based on the results of your partner's carrier testing, as well as the larger family planning questions and considerations.
Parenthood, Your Health, and You
The quality of your health can affect how much time and energy you will be able to devote to parenting activities. As some parents with CF have noted, illness has both an emotional and a physical component that is important to consider.
"When I'm not feeling well, pushing myself to take my kids to an event at school anyway can actually set me back further — not only in terms of my health, but as a parent. When you're not taking care of yourself, it's easier to become grumpy or short. That's why it's so important to ask for help and rely on my family or community to step in and take my kids to that event so I can take the time I need.” — Anna McVey-Tyson, adult with CF
Discussing your family planning goals with your CF care team, prioritizing your own health, and making sure you have a strong support system that can help out during times of need are all important first steps toward deciding if having a child is right for you.