Whether or not you have CF, there is a lot to consider when you are deciding to have children. As someone with CF, you will need to think about your health, passing CF down to your children (if you decide to become pregnant), and what it would be like to be a parent. You may also want to consider other options to start a family such as surrogacy, adoption or foster parenting.
Should I have children?
Deciding to start a family is a big decision. It is a personal choice and there is no right or wrong answer. Some women with CF want to become a parent and some do not. Both of these choices are okay! If you are thinking about having children, the best first step is to talk with your partner, family, and/or friends. You should also always talk with your CF team because they know you and your health and can support you with your choice.
How do I know if I will have the support I need?
Think about the people in your support system and how they help you now and how their role or availability may change if you have one or more children. You should also consider how having children will affect your daily life. Will you be able to balance taking care of yourself and a child? When will you do treatments and take care of your CF? Who are the people who will help you with child care if you get sick?
Am I healthy enough for pregnancy?
Many women with CF have asked this question! Studies have shown that pregnancy does not affect survival for women with CF. However, there are many changes that happen inside your body if you become pregnant. You may feel very tired, extra hungry, and/or nauseous (feeling like you want to throw up). Your breasts will likely get bigger and feel tender, and you may have stomach pains similar to menstrual cramps. If you have CF, these changes may be tough at times for your body to handle.
In addition to your CF medications, you’ll need to take a daily prenatal vitamin, which includes folic acid. Folic acid (also known as “folate”) prevents serious spinal cord birth defects.
When should I become pregnant?
You should talk to your CF team if you decide you want to become pregnant. The best time to begin trying is when you are in your best health. This means that your lung function, weight, and overall health are the best that they can possibly be. This will make pregnancy and childbirth easier and safer for you and your baby.
Will my baby have CF?
CF is a genetic disease. This means that the disease is passed down from both parents to a child. You need two copies of a CF gene mutation (one from each parent) to have CF.
A person with one CF gene mutation is a carrier for CF. CF carriers do not have CF symptoms, but could pass on the CF gene on to their kids. If you have CF and are thinking about getting pregnant and having children, it’s important to think about finding out if your partner is a CF carrier and the chances of passing on CF to your children. If you become pregnant through in-vitro fertilization (or IVF), your fertilized eggs can be tested for CF before implantation.
Below is an image that shows the chances of passing CF on to your children with a partner who is a carrier for CF:
If you have CF and your partner is a carrier for CF, there is a 50% chance that your child will have CF and a 50% chance your child will be a carrier for CF.
Below is an image that shows the chances of passing CF on to your children with a partner who is NOT a carrier for CF:
If your partner is not a carrier for CF, there is a 100% chance your child will be a carrier of CF and a 0% chance that your child will have CF.
How can I find out if my partner is a CF carrier?
A genetic test can be used to tell if a person is a carrier for CF. This is done using a blood sample or a scraping of the cells from the inside of a person’s mouth. This test only looks for the most common CF gene mutations. This means if it comes back negative, there is still a small chance a person is a CF carrier (just carrying a less common CF gene mutation.)
Should my partner get genetic testing for CF?
It is a personal decision to get genetic testing to find out if your partner is a CF carrier. In addition to your family and friends, there are many people you can talk to about whether this is the right choice for you. Genetic counselors are a great resource to ask questions and to help you understand the testing options. You should also always talk with your CF team because they know you and often know genetic counselors that are familiar with CF.
The Cystic Fibrosis Foundation (CFF) website has more information on genetic testing: https://www.cff.org/What-is-CF/Testing/Carrier-Testing-for-CF/
You can also visit the National Society of Genetic Counselors website or call 610-872-7608.
What are the options for becoming a parent besides pregnancy?
There are many ways to become a parent, outside of pregnancy, including surrogacy, adoption, and foster care.
What is surrogacy?
Surrogacy involves taking an egg from your ovary or a donor and sperm from a male partner or a sperm donor, and fertilizing the egg with the sperm in a lab. When the egg fertilizes it becomes an embryo. The embryo is then placed in the uterus of another woman, who is called the “surrogate” or the “gestational carrier.” A “surrogate” has a genetic connection to the baby and has donated her egg to the embryo. A “gestational carrier” is a woman who carries a baby for an individual or couple but does not have a genetic connection to the baby. There are a lot of steps in between that involve much coordination by a fertility team. Insurance coverage for this procedure can unfortunately be somewhat complicated. Different insurance companies cover different costs and coverage can vary drastically between states and countries. The procedure itself, as well as paying a surrogate, can get very expensive. You’ll need to do your research to find out if surrogacy is legal in your state and also think about what it would cost.
State by State Surrogacy Law Practice: This is a private website founded by a lawyer who has expertise with surrogacy. There is a color–coded map of the United States on the website that clearly explains the surrogacy laws that apply to each state. You can find out how the law works in each state just by clicking on the state image. Keep in mind that the practice of surrogacy is ever changing. An experienced lawyer must still determine the prevailing practice in a particular state court at the time surrogacy is initiated.
What is adoption?
There are many ways to adopt a child. You can choose to adopt a U.S.-born child, a child with special needs, or a child from another country. You can also choose to adopt through an agency or independently. The cost of an adoption varies depending on the process you choose.
Adoption–Parents Magazine: This website is sponsored by “Parents” magazine and does a nice job explaining the different types of adoption offered in the United States. You’ll also find stories from families who talk about their adoption experience.
US Department of Health and Human Services–Administration for Children and Families: Adoption laws vary significantly from state to state yet they must comply with general rules set by the United States Federal Government. This resource answers some of the questions you might have about adopting a child from child welfare services; however it is not meant to replace a conversation with a lawyer that is knowledgeable about adoption laws, the cost, etc. where you live.
Intercountry Adoption–Bureau of Consular Affairs–U.S. Department of State: This website offers information for United States citizens who are considering adopting children from abroad. Adoption between the U.S. and other countries is different than domestic adoptions and is governed by both the laws of the country in which a child lives and the country in which the adoptive parents live. You can learn about the adoption practices in most foreign countries by clicking “Country Information,” then searching for a country in the drop down menu.
What is foster care?
Foster programs support children who can’t remain in their parents’ homes because they’ve been abandoned, mistreated, or they are unsafe in their family home. Foster care takes place in a variety of settings, including the home of a relative or friend, a foster family home, a staffed group home, or, for special-needs kids, an institution that offers professional therapy and treatment. With federal guidance, states and local communities find people to become foster parents. If you’d like to become a foster parent, you have to complete required training and a background check and have a caseworker conduct a home visit to determine whether you’re ready to foster. In some cases, you can adopt your foster child.
Foster Care–Parents Magazine: This website is sponsored by “Parents” magazine and explains the process of foster care in the United States.
Establishing a Routine
New parents find that a new child is a big disruption to their regular routine. As someone with CF, you should re-establish a routine that works with your and your family’s schedule. Fit in treatments during nap time or have your partner or support person do some feedings so you can take care of yourself.
Involving Children in Treatments
As your child gets older, you can include them in your CF care. Have your child help you set up a treatment or do your airway clearance or treatments during playtime. This way you can spend as much time with them as possible and introduce the idea of CF to them early.
Being a parent is hard work. You may find it tough to balance your care and the care of your child, and you may often need to depend on others to help. Do not be afraid to ask for help for your emotional and mental health needs if you choose to become a parent. Encourage your children to ask questions about CF to help them understand what your CF means for them and your family. Your CF care team can be a great resource to help you if you decide to become a parent.
Deciding Not to Have Children
After taking everything into consideration, you may decide that becoming a parent is not the best option for you. That’s OK. Many people, with and without CF, decide not to have children and go on to lead full and happy lives.
Here are some specific talking points and tips that may help you talk with your CF team about deciding to have children:
- Tell your CF team what you want. If you want to have children, tell them that! If you do not want to have children, tell them that! If you aren’t sure, tell them that as well. Talking with your team now can help you both PLAN for what having children might mean for your health and life.
- Example: “I want to talk with you about having children. At this point in my life, I want to have children/do not want to have children/am not sure if I want to have children. Since I know deciding to have children is a big decision, I want to make sure I can talk about it with you.”
- Ask your CF team questions. If you are curious whether you are healthy enough to become a parent, you should ask! Some questions to consider asking are:
- “Am I healthy enough to become pregnant or become a parent?”
- “How can I get my health to the best it can possibly be before I become pregnant or become a parent?”
- “Will my baby have CF if I become pregnant?”
- “How does my partner get tested for CF gene mutations/find out if they are a carrier?”
- “Should my partner get carrier testing?”
- “Do you know a genetic counselor that is familiar with CF who I can talk to?”
- “What are other resources that could help me explore options for becoming a parent that you could refer me to?”
- Talk to your CF team about creating a plan to prioritize your health when you also have to parent a small child.
- “I’m worried about prioritizing my health when I have a child to care for. How can I make a plan so I am able to stay healthy while raising a child?”
There is a lot of information to consider when you have CF and are deciding whether to become a parent. You can print this guide or have your provider refer to the webpage during your visit.
The Cystic Fibrosis Foundation (CFF) website has reliable resources that you can look at if you are deciding to have children: https://www.cff.org/Life-With-CF/Transitions/Family-Planning-and-Parenting-With-CF/