Family BuildingThe different paths to building a family
CFReSHC CF-SRH Resource Guide for patients and providers
Having children is a life-changing experience. There are many things to think about when determining if, when, and how to build a family. There may be factors that are out of a patient’s control, like health or life circumstances, that may limit these options.
Most people with CF want to live their lives on the trajectory of typical able-bodied individuals, which can include getting married and becoming a parent . In a survey on sexual and reproductive health behaviors of young women (ages 15-24) with Cystic Fibrosis (CF) over 75% of the participants answered yes when asked if they want children in the future . When asked about their thoughts and feelings about decisions about whether and how to have kids, most young women indicated their disease plays a major role .
- Which resources have you accessed to obtain information about all the ways to become a parent?
- With whom have you discussed becoming a parent, or living a life without children?
- What concerns do you have about methods to becoming a parent, or about parenting?
- Have resources for adoption/ surrogacy/ fostering readily available to share with patient, if applicable.
- Have information readily available to refer patient to a fertility clinic/maternal fetal medicine specialist/mental health professional for assistance with these complex issues, if needed.
- What options do I have to build a family
- Can you share resources for adoption, fostering, surrogacy or fertility clinics
- What concerns do you have about my health and parenting?
- What actions can we take to make me as healthy as possible to become a parent?
Family Building Choices and CF
When thinking through building a family, many individuals with CF wonder if being a parent will affect the course of their disease . They want to know about health effects from lack of sleep, respiratory or other illnesses brought home from children’s schools, and the impact of the overall stress of raising children. Right now, no research exists on whether or how any of these factors impact measures such as longevity, FEV1, an increased need for transplant, and other indicators of quality or quantity of life. For more information about being a parent with CF, go to the Parenthood Chapter in this guide.
There is also little research on how people with CF build their families, including how many people adopt, foster, or use a surrogate. Questions remain, such as what percentage of people with CF decide not to have children, specifically because of CF-related health concerns? How does the decision to have or not have children affect the mental health of people with CF? How do patients cope with feelings of guilt or loss if they want to become a parent but are unable to do so? How does the stress of making a decision to parent affect them?
To make an informed decision about building a family, patients with CF want to know if there is a difference in health outcomes between women who had a baby through pregnancy vs. another method. The Cystic Fibrosis Foundation (CFF) Patient Registry could track this information, providing prospective data that can help discern if there is an association of CF health outcomes with methods for building a family and if so, what it is.
With the approval of highly effective CFTR modulators, health outcomes of women with CF are changing rapidly. Many women are benefiting from increased lung function and fewer pulmonary exacerbations. They are expressing hope for a potentially increased lifespan and, with that, are adjusting their life plans. Understanding if and how patients’ family building decisions are influenced by the benefits of CFTR modulators poses an important avenue for new research, especially given the suspected increase in unexpected pregnancies among patients taking the drugs .
Suggested Family Building Support Provided by the CF Clinic
Providers can help patients build their families by offering guidance and resources . It is therefore helpful for the care team to have local resources compiled and available for patients in order to help facilitate discussions about family building. These resources may include contact information for maternal fetal medicine (MFM) doctors and high-risk OB/GYNs, fertility clinics, local adoption agencies, foster care agencies, surrogacy agencies, and reproductive health and adoption lawyers. As part of the referral, many agencies/clinics will require a letter from the provider asserting that CF will not prohibit the patient from becoming a capable parent.
Since surrogacy and adoption laws greatly vary throughout the country, providers and patients should become aware of their state’s and county’s laws. The CF care team can draft a letter that can be adjusted for each patient’s specific circumstances. Having this template on hand could prevent any delays once a woman with CF has decided to pursue parenthood.
When the CF care team builds their referral list, it is preferable that the agencies/ providers included have experience with or knowledge of CF. The care team can educate agencies/providers in the clinic’s service area about CF by providing materials to them, such as this CFReSHC guide and/or relevant literature, and offering to communicate with them to further their knowledge base. Identifying providers that work with the same electronic medical records (EMR) system also helps to facilitate coordinated care.
Even if a patient is not planning to become a parent, they may still need the CF care team’s assistance, especially if they are struggling with the decision. Mental health referrals are especially important to help couples grieve for the lost opportunity to have children. Indeed, counseling can be helpful for any person with CF who is navigating the question of whether or not to have kids.
Lastly, the care team can offer patients with CF resources for peer networks, such as the CFReSHC Patient Task Force community (made up of women with CF) or CF Peer Connect. The care team can offer to initiate those connections, with both patients’ consent. See Appendix 2 for a referral document clinics can fill out for their own service area.
Family building can be an emotional process for many people and it can be helpful to reach out to friends and family or connect with other people who have CF to ask them questions about their situation and decision-making process.
When thinking through whether and how to grow a family, there are many aspects to consider: parenthood preferences, support system, health status, finances, and lifestyle.
Women with CF can use the list of considerations below to explore their thoughts or as a journaling exercise, either by themselves, with a potential parenting partner, their support team, or in conversation with their providers.
1. Parenthood considerations
- Why do I want to be a parent?
- *We ask “why” instead of “do” because there are many reasons for wanting to grow your family. Many people feel family or societal pressures to have children but have not taken the opportunity to be introspective about their decision.
- Will I regret not having children? Will I regret having them? What are the reasons for this regret?
- Is it important to me and/or my partner to have that our child be genetically related to us?
- When do I want to have child(ren)? Considering the progressive nature of CF and other life circumstances, is this something I feel comfortable pursuing sooner, or do I want to wait?
- Do I want another child? What would be the optimal timing to pursue that option?
- When do I start the process of family-building?
- *Most ways of becoming a parent can take longer than a year.
- Do I want to do egg harvesting now to preserve the option of having a child with my genetics just in case my health declines? Am I physically able to do that now? [see (In)Fertility chapter]
2. Support System Members
- Do I have a strong support system near me? Who will help take care of me or my child when I am sick, or if I need a medical test or procedure?
- Who makes up my support system? And how far away do they live?
- Do I have a partner or will I be a single parent? What concerns does my partner have about being a parent? Do they want to be a parent?
- Is my partner a carrier for CF? If so, does that change the calculus of our decisions or our options?
- Is my partner willing to be a single parent?
- Am I willing to be a single parent?
- What happens if my partner and I divorce or break up?
- How many children do I want to have? Does my partner agree?
Is my partner willing and able to take on the bulk of childrearing and household duties, if necessary?
- What is my partner’s/my parental leave (FMLA) policy? Sick leave?
- Do we value the same parenting styles?
- Who will carry on the parental duties if I die?
3. Health Status
- How often am I in the hospital? On IVs? Unable to help around the house due to a cold or virus or other health issues?
- Will I have energy to care for an infant with sleepless nights? Chase a toddler? A grade schooler? a high schooler?
- Do I feel physically stable enough to bear and/or care for a child? Do I feel healthy enough to schedule or even delay my own care to attend to my child’s needs?
- How much sleep do I need?
- Am I willing and able to risk getting sick more often due to germ exposure from my child’s daycare or school?
- Will having a child impact my mental health? In what ways?
4. Financial Considerations
Can our household absorb the cost of:
- Raising a child, including: school, babysitting, food, housing, health insurance
- Reduced work hours, or a single income source if I stop work
- Fertility treatments/surrogacy/adoption
- Are there grants or friends/family willing to help me with these expenses?
- Will being a parent fit with my lifestyle?
- Am I potentially going to need to change my work, travel, or hobbies? Am I comfortable with that?
- How will I find/build a social network/ friends in my (new) life circumstances (e.g. finding other people who do not have children)?
There are many avenues to becoming a parent and building a family but, unfortunately, there are no available, published CF-specific resources evaluating the different options of pregnancy, surrogacy, fostering, adoption, and living a life without children. Here, we discuss the potential advantages and challenges people with CF might experience for each option.
Although one can never be sure how pregnancy will impact their health, we recommend becoming aware of the ways that it can affect one’s body. Pregnancy can alter many aspects of health in CF, such as lung function, frequency of exacerbations, incidence of hemoptysis, medication regimens, CFRD management, and mental/emotional health. We recommend having serious conversations with your spouse, partner, friends, or family members about the potential health risks and benefits of pregnancy.
We recommend you consult with your CF and gynecological care teams prior to trying to conceive, in order to optimize your health prior to pregnancy. (This is known as preconception care and is recommended for all women, but is especially important in CF.) This way, the care teams can make any necessary modifications to your treatment regimen to ensure that both you and your future child are as safe and healthy as possible. If you have an unexpected pregnancy, please contact your CF care team right away, and refrain from stopping medications without medical advice. For more information on questions to ask your doctor, see the Pregnancy chapter in this guide.
Potential Advantages of Pregnancy (Natural or through Assisted Reproductive Technology):
- You can create an emotional and physical bond with the baby.
- You have the option to breastfeed.
- You can have a genetically-related child.
- You can have the experience of pregnancy (which may be desirable to some women).
- Conceiving a child without assistance is less expensive than other methods and can be highly enjoyable.
Potential Challenges of Pregnancy (Natural or through Assisted Reproductive Technology):
- There may be negative impacts on your health (loss of lung function, gestational diabetes, hemoptysis, inability to maintain weight, etc.)
- You may discover you cannot get pregnant. You may need to utilize infertility services to get pregnant. Visit the (In)Fertility chapter in this guide for more information.
- You may have to discontinue certain medications, like some antibiotics and antidepressants, because they could cause harm to the developing fetus during pregnancy and/or while breastfeeding.
- There is a chance your baby will either have or will be a carrier of CF:
- Baby will be a carrier of CF if only one parent has CF. Your partner can be screened for a wide variety of CF genetic mutations; if a carrier, the baby will have a 50% chance of having CF.
- A fertility clinic can perform In vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD) if your partner is a carrier and you wish to pursue those routes.
- Egg donation is an option to minimize the risk of passing CF on to your offspring. You can read more about in the (In)fertility chapter in this guide.
- Given the state of current scientific knowledge, you and your doctor may disagree about taking CFTR modulators or other medications during pregnancy or while breastfeeding, potentially causing emotional strain. For more information about the current science of modulators and pregnancy, see the Pregnancy chapter in this guide.
- You may experience significant fatigue while recovering from pregnancy and caring for a newborn at the same time.
- There is a risk of postpartum depression, worsened depression, or anxiety after giving birth.
- If you have a C-section, recovering might be more painful, especially when you cough, and your ability to perform airway clearance may be limited.
- The decision about whether or not to breastfeed might cause stress.
- There is currently societal pressure to breastfeed, given its benefits to the infant.
- Breastfeeding requires a woman to limit some of her medications.
- It may be difficult to maintain one’s weight while breastfeeding.
- If breastfeeding exclusively, it may be difficult to get enough sleep. Unless you decide to pump or supplement with formula, you will be unable to share feeding responsibility with your partner.
- Bottle feeding allows your partner to assist with day or night feedings– or even to do all night feedings — which allows you to get more sleep after the baby is born.
In gestational surrogacy, usually referred to as “surrogacy,” the child is not genetically related to the woman carrying the pregnancy, known as the gestational carrier or surrogate. A fertility doctor uses the process of IVF to create the embryo and then implants the embryo into the surrogate. The egg and sperm might come from the intended parent(s) (the person with CF and their partner), or from egg or sperm donors. A surrogate might be a friend or family member, or they might be someone who a surrogacy agency matches with the intended parents. The prospective parents have the option of continuing their relationship with the surrogate after the baby is born.
The intended parent(s) and gestational carrier are required to create a legal contract before implantation that states the embryo belongs to the former. This contract defines the financial agreement between both parties, detailing how medical costs will be paid. It also defines the prospective parents’ expectations for the surrogate’s behavior while pregnant, and what will be done if there is an issue during the pregnancy. The intended parent(s)’ insurance may or may not cover prenatal, labor and delivery, postnatal medical care costs, and medical insurance coverage for the surrogate, so it is important to check one’s insurance benefits and the surrogate’s insurance benefits to see what each will cover. You may need to obtain additional or different insurance or pay these costs out of pocket. These costs are separate from those of reproductive technology used to create and implant the embryo.
Surrogacy laws and legal precedents can vary by state or even by county. These laws may dictate where the intended parent(s) choose to use a gestational carrier and how the intended parent(s) become legal guardians of the baby.
Potential Advantages of Surrogacy:
- Your child may be genetically related to you and/or your partner
- Through the IVF process, you can opt for pre-implantation testing /diagnosis to test embryos for CF, other genetic diseases, and chromosomal conditions that increase the miscarriage risk [See the (In)Fertility chapter in this guide].
- Someone else carries the baby for 9 months, so:
- Your health is not impacted by pregnancy.
- Your baby’s health is not impacted by your illness or medications (also allows you to safely take newly approved medications, teratogenic medications, or participate in clinical trials).
- You don’t risk having to choose between prioritizing your health or the baby’s during the pregnancy.
- There is no pressure to breastfeed (societal or otherwise) because you won’t produce milk. Bottle feeding allows your partner to assist with night feedings– or even do all night feedings — allowing you to get more sleep after the baby is born.
- You have 9 months to prepare for your baby, including:
- Maximizing your own health (e.g. a strategically timed tune up, if needed).
- Reading and learning how to care for the baby, and setting up your home without the fatigue of pregnancy.
- You can be a part of the pregnancy journey with the gestational carrier by attending appointments and ultrasounds, either virtually or in-person.
- You can choose your gestational carrier — someone you feel comfortable with, and someone you feel is medically and emotionally able to carry a pregnancy.
- You can experience the selflessness of someone else who carries a baby for you, which may lead to friendship.
Potential Challenges of Surrogacy:
- If you wish for a biologically-related child, you will need to undergo egg harvesting, which, in some cases, can be difficult on your health. [To get more information about egg harvesting, read the (In)Fertility chapter in this guide].
- Surrogacy is very expensive. Costs may include:
- Egg harvesting, or purchasing donor eggs or sperm
- Legal fees – an attorney for yourself and for the surrogate to create a legal and binding contract, court costs to name you as the legal guardian of the baby after birth
- Medical Costs – pregnancy, labor and delivery expense, or additional insurance; some gestational carrier screening expenses may not be covered at all
- Agency and surrogate fees – reimbursement of surrogate travel costs, childcare fees the surrogate may require for appointments, reimbursement for missed work, a maternity clothes allowance, etc. Using a surrogate through an agency is typically more expensive than engaging a friend or family member.
- The legal aspects of surrogacy can be complicated. Laws could force you to use a surrogate in another state, which could require additional travel or affect how you and your partner are named the child’s legal guardians.
- Determining insurance coverage for this method of family building can be complicated. It can be emotionally difficult for some women not to carry the pregnancy.
- You may feel disconnected during the pregnancy. Since you are not the one pregnant, you need to relinquish a level of control over the pregnancy; the surrogate may not select the same lifestyle, diet, and activity choices that you would. In some cases, the surrogate will feel an emotional connection to the baby, especially right after birth. Be prepared to navigate these possible circumstances.
Fostering a child provides a home for someone in need of support, stability, and love. Fostering offers a flexible family building option for people with CF, depending on which type of fostering the person/couple chooses.
There are several types of fostering arrangements, which vary mainly in the length of time one takes care of the child: 1) respite fostering lasts 1-7 days; 2) short- term and emergency care fostering lasts anywhere from 1 week to 1 month; and 3) long-term placement lasts from months to years with the same child.
As a foster parent, you are able to choose the level of care you feel able to provide, including what type of placement, how many children, ages of the children, any additional needs the children require, etc. You may have the option of adopting a child as a foster parent (fost-adopt) if it proves impossible for the natural family to reunify; however, one of the key goals of the child welfare system is biological family preservation and reunification, so it is advisable to manage and temper expectations (See https://www.childwelfare.gov/topics/permanency/legal-court/fedlaws/).
Becoming a foster parent requires an application process. Because the foster child is officially under the guardianship of the state, the process involves a state background check, home inspection, medical exam, foster parent training, and a lot of paperwork. This multifaceted process ensures the child will be safe in your home and helps to prepare you, as potential foster parents, for this type of parenthood.
To find out more about fostering, consult local resources through the Department of Child and Family Services (DCFS) in your state and local foster agencies. To see if fostering is a good fit for you, you can consult with your CF care team and people knowledgeable about the foster care system and experience, including women with CF who are foster parents.
Potential Advantages of Fostering:
- You are helping children in need.
- You are not risking a change in your health status that pregnancy can cause.
- You get to experience parenthood.
- It is not a lifelong commitment and it is flexible for how often, how long and when you have a child in your house.
- You can take a break from parenting in between placements to attend to your health or plan a tune-up, etc.
- You receive compensation as a foster parent, which typically takes the form of a daily stipend. The state provides this compensation to subsidize the care of the foster child. The compensation amount depends on the level of care the child requires. Some states even pay for daycare and cover all education-related costs.
- Other approved foster parents can provide respite care as needed. Respite care can be very helpful if you have a pulmonary exacerbation that requires you to be hospitalized or to be on home IVs. Respite care costs are deducted from the foster parent stipend so that a check can be sent to the respite care providers.
- In some cases, you are able to adopt the child (e.g. reunification efforts with the natural family have failed or are impossible, natural family relatives cannot adopt the child, etc.).
- You have the flexibility to foster specific ages & levels of care that align with your health needs. For example:
- if you need more sleep and don’t have the physical strength to carry around a little one, you can choose to open your home to kids ages 5 and up.
- You can choose to only foster teens, or only ages newborn to age 3.
- You can request certain levels of care; meaning you can delineate if you can or cannot care for a child with health or disability needs, and what level of severity you are able to consider.
- You can always decline if/when you are offered a placement. You can wait for a placement that sounds like it will be a good fit for you.
- As a female with CF, you are an expert in navigating the health care system and, as such, have the knowledge to be an effective advocate for children in your care.
Potential Challenges of Fostering:
- It can be emotionally difficult when a child moves to a new foster home or reunites with parent(s) after you have established an emotional connection with them.
- Sometimes the foster care agency provides little information about the child’s past history when they are placed with you, leaving you with gaps in understanding their needs and how to best support and take care of them.
- Children can come with a variety of challenges, including varying levels of trauma. You can obtain additional training to care for children who may have more intense needs.
- Fostering involves a lot of paperwork, licensing rules, training, and continued training education. This is required to keep one’s fostering license current.
- As with any child, foster children require multiple appointments you must attend, which can be a burden for people with CF who already require many doctors’ appointments of their own. These include:
- Biological family visits (can include separate visits for parents, siblings etc)
- Court appearances
- Doctor and behavioral health appointments
- School meetings to sort out any needed individualized education program plans (IEPs), often needed for trauma, or emotional or academic support.
- Fostering will impact your entire family; this aspect of fostering is something to seriously consider before embarking on this family-building path.
- Members of your support system who wish to babysit your foster child(ren) will have to undergo background checks or become foster-certified to do so.
Adoption is the process of legally becoming the parent of a child. Once adopted, the child has the same legal rights as your natural child.
There are many types of adoption: domestic or international; open or closed; relative or non-relative. In non-relative adoption, the child does not have the adoptive parents’ genetic profile. Relative or kinship adoption occurs when a family member adopts a child relative whose birth parents have either died, have neglected or abandoned the child, are experiencing an illness, or have other circumstances that prevent them from being able to continue caring for the child. In current adoption practice, kinship adoption is preferred over non-relative adoption because it maintains family ties. In cases when relatives cannot be found, adoption can occur with “fictive kin,” meaning individuals who are known to the child/family, are considered by social workers to have a positive relationship with the child, but who are not related.5
The adoption process involves medical, social work, and legal components. A social worker will help facilitate and coordinate the adoption process and all the intricate details it involves. If you would like, a pediatrician trained in adoption medicine can assess the child for physical and mental medical needs that may need attention (see www.aap.org for more information). Because adoption is a permanent, legally binding process that determines the future of a child, an adoption’s finalization usually takes one year after initial placement.
Like other forms of family-building, it takes a lot of research and time to decide upon domestic or international adoption, find the most suitable agency, and go through the adoption process. Like surrogacy laws, state laws about adoption also differ. Whatever you do, it is inadvisable to base your ideas about adoption upon movies or books. Remember, each person’s experience with adoption and with family-building is different.
Most adoption agencies require an adoptive parent applicant to submit letters of support as part of the application process. Friends, clergymen, or colleagues can write these letters. Sometimes, when asking your support system for such letters, you may find out that friends or family do not view you as fit to parent because of your CF. As such, make sure to ask people who you deeply trust to support you and your decision to adopt.
Your doctor will also need to write a letter of support stating that your health will not impact your ability to parent. It is important to know that for domestic adoption, the Americans with Disabilities Act prevents agencies from discriminating against you on the basis of your CF, as long as you do not pose a safety hazard to the child. Depending upon the country, however, international adoption agencies/countries can consider CF in their decision in your candidacy to adopt a child.
Potential Advantages of Adoption:
- You are not risking a change in health status that pregnancy could cause.
- You are providing a home to a child/baby who needs one.
- Parenting classes that are required for the adoption process are generally affirming; they can provide you with the tools and resources necessary to parent different types of children. They also can either solidify the decision to adopt or can bring prospective parents to realize that adoption and/or parenting is not for them.
- Adoption communities provide support and new friendships.
- Good adoption agencies can be quite supportive during the process.
- You have time to think through the responsibilities, parenting philosophies, attitudes, and family histories that come with parenting. Couples can become closer in the process of thinking through all the considerations.
- Adoption is deliberate; there are no unplanned adoptions that catch partners off guard, so every decision during the process is intentional.
- Public domestic adoption can be much less expensive than other parenting options. Oftentimes, if a parent is willing to adopt a child with a disability, there are incentives that are provided to lower the cost and provide a home to a child.
Potential Challenges of Adoption:
- Prospective adoptive parents often have to navigate others’ opinions about adoption, including from friends and relatives, even their own parents.
- International adoption applications can consider health status and exclude people on the basis of their health. Each country has specific standards, so thorough research is helpful.
- In an open adoption, the birth mother can choose the adoptive parents and use health status like CF against those particular potential parents.
- Some agencies give biologic parents a lot of say over who adopts their child; for example, the parents may want their child to have siblings. The parents might make assumptions about your CF and ability to parent.
- International adoption and private domestic adoption can be expensive, but costs are similar to IVF.
- Transracial adoption has its challenges because of racism in our society and preconceived notions of what families should look like.
- Adopted children can have complicated feelings about their identity.
- For some countries in an international adoption, the wait to adopt can be quite long.
Many people with CF do not have children. Some women with CF are childless because they do not want children. Other women may have chosen to forego parenthood for health reasons. Still others may have felt like they never had the opportunity to become a parent. All these groups of women can lead fulfilling lives without children.
If a woman with CF wants to be a parent but is unable to become a mother, she can address these desires by becoming a caregiver to her nieces and nephews and/or her cousins’ or friends’ children. She can make these children a large part of her life. She can also include children in her life by volunteering or working with children at a local YMCA, Boy or Girl Scouts, athletics, tutoring, or becoming involved in a community-based or religious organization. Working in professions that cater to children, like teaching, nannying, or pediatrics (as a physician, nurse, therapist, or other professional), can also allow a female with CF to care for children. Other women with CF may choose to have pets, fulfilling a similar desire to nurture and parent animals.
Of course, women can also decide they do not want to be a caregiver at all. Not having children provides certain advantages.
Potential Advantages of Not Having Children:
- You do not risk a change in health status that pregnancy or parenthood could cause.
- You will have fewer financial obligations, reducing general financial stresses in life, and possibly have more disposable income.
- You will have more time and flexibility to get enough sleep and do medical treatments, exercise, and maintain your health.
- You will have more time to pursue a career, hobbies, or other interests, like travel.
- You will likely be less exposed to germs that trigger CF exacerbations or post-transplant infections.
- If you have a partner, you can spend time with them alone, including time for intimacy.
- If you have a partner, you may have fewer arguments, and will not have to divide up parenting duties.
- You will have more time to develop other relationships in your life.
Potential Challenges of Not Having Children:
- You may feel societal or family pressure to have kids, especially from parents who desire grandkids.
- Deciding to not become a parent can lead to conflict with a partner or spouse, especially if they want children.
- You may experience feelings of guilt, sadness, or loss if you and/or your partner wanted children and were unable to have them.
- Finding peers with similar lifestyles may be difficult.
- You may feel left out when friends start having babies or raising children.
- You may feel socially awkward or sad when friends’ primary topic of conversation becomes their children.
- Loss of the benefits of parenthood:
- Kids can be a great motivator to keep active, healthy and compliant with treatments.
In addition to this Family Building chapter, the CF community offers many ways to get support and advice from others who may have similar situations and goals. CFReSHC, for instance, holds sexual and reproductive health (SRH) topic-specific Patient Task Force (PTF) meetings, or CFF’s CF Peer Connect will match you with a person with CF who has had a similar experience and can offer mentorship. Female-focused facebook groups can also connect you with women from around the world who are going through similar experiences and can offer support.
Your CF care team can also provide information or referrals to other healthcare providers or agencies that can help walk you through your options. Here are some links to get you started on your research. These include some legal resources, as surrogacy, adoption, and fostering laws vary by state.
Child Welfare Agencies directory
(to search for foster and adoption agencies in your area)
Center For Young Women’s Health Guide
*coming soon* Online Reproductive Decision Aid for Cystic Fibrosis
CF Trust “Starting a family” booklet
Peer to Peer Advice
- The CF Care team offers medical advice, but they can not predict future outcomes.
- You really need to know and understand the financial implications of having children.
- Adoption requires letters of support from friends. You might learn information you did not know that could be hurtful, such as they do not see you as a fit parent because of your CF.
- Remember: your options and/or decisions can change. Keep current with research/ options as you may change your mind about some things, such as not having kids or adopting instead of getting pregnant.
- Tune out the noise. If you are building your family in a non-traditional way, many people will judge and you need to be able to tune it out.
- Hailey CE, Tan JW, Dellon EP, Park EM. Pursuing parenthood with cystic fibrosis: Reproductive health and parenting concerns in individuals with cystic fibrosis. Pediatric pulmonology. 2019;54(8):1225-1233. https://search.datacite.org/works/10.1002/ppul.24344. doi: 10.1002/ppul.24344.
- Kazmerski TM, Sawicki GS, Miller E, et al. Sexual and reproductive health behaviors and experiences reported by young women with cystic fibrosis. Journal of Cystic Fibrosis. 2018;17(1):57-63. http://dx.doi.org/10.1016/j.jcf.2017.07.017. doi: 10.1016/j.jcf.2017.07.017.
- Kazmerski TM, Gmelin T, et al. Attitudes and decision making related to pregnancy among young women with cystic fibrosis. Matern Child Health J. 2017;21(4):818-824. https://www.ncbi.nlm.nih.gov/pubmed/27531009. doi: 10.1007/s10995-016-2181-z.
- Ladores S, Raju D, Bray LA. Fertility and reproductive health implications of targeted therapeutics for cystic fibrosis. Reproductive system & sexual disorders current research. 2016;5(4). doi: 10.4172/2161-038X.1000194.
- Child Welfare Gateway. Introduction to adoption. https://www.childwelfare.gov/topics/adoption/intro/. Web site.
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