Reproductive options for people with NF: What you need to know
- Jul 23
- 5 min read
Planning to have a child is already very complicated, but having a genetic condition like Neurofibromatosis (NF) adds more considerations related to genetics, health and treatment options.
This article discusses various reproductive options including natural conception, IVF and genetic testing for individuals with NF and provides information on where to seek additional support.
NF is inherited in an autosomal dominant way. In simple terms, it means that if one parent has NF, each pregnancy has a 50% chance of inheriting the NF-related genetic change. Even when a child inherits NF, it is not possible to predict how severe their symptoms may be. There is significant variation in symptoms even within the same family.
Understanding Inheritance and Risks
For many people, the 50% chance of passing on NF to a child can be difficult to think about. It raises concerns over pregnancy, finances, parenting, and what is right for your family.
On top of the genetic risk, some women with NF may also be taking medications to manage their NF-related symptoms that are not recommended to be taken during pregnancy. This becomes another factor to consider when thinking about starting a family.
Some women may have concerns over whether undergoing pregnancy may affect the growth of neurofibromas or other NF-related symptoms. Research on this topic is still ongoing, and limited information is available.
If you have concerns about pregnancy and how it may impact you, consider speaking to your GP, NF specialist or a genetic counsellor. They may be able to provide a personal risk assessment and give you advice about what options you might consider.
Reproductive Options for People with NF
There are many options you may consider when planning to have a child. Some options available to people with NF are listed here.
Getting pregnant naturally
Each naturally conceived pregnancy will have a 1 in 2 (50%) chance of passing NF on to the child. You may undergo genetic testing during the pregnancy to learn if the unborn child has NF.
Prenatal Testing
Prenatal testing involves genetic tests conducted during pregnancy to learn if the unborn baby has NF. There are two tests which may be performed:
Chorionic Villus Sampling (CVS):
Chorionic Villus Sampling (CVS) is a medical procedure performed on a pregnant woman to take a small sample of cells from the chorion (placenta) either using a needle through the abdomen or a narrow tube through the vagina. The cells are then tested to determine if the baby has certain genetic conditions.
This test is done between 11-13 weeks of pregnancy. Depending on the type of test, results are usually available within two to three weeks. More information on CVS is available here: Chorionic Villus Sampling (CVS) by RANZCOG CVS by WA health
Amniocentesis:
An amniocentesis is a medical procedure performed to sample the fluid around the baby in the uterus (womb). This fluid is collected using a needle inserted through the pregnant woman’s abdomen.
This test is done between 15-19 weeks of pregnancy. Depending on the type of test, results are usually available within two to three weeks.
More information on Amniocentesis is available here: Amniocentesis by RANZCOG Amniocentesis by WA Health
IVF with genetic testing
In-vitro fertilisation (IVF) with pre-implantation genetic testing (PGT). In this process, the parents’ egg and sperm are combined outside the body, and the resulting embryo is tested for the NF-related genetic change. An embryo without the NF-related genetic change can then be selected and implanted to proceed with the pregnancy.
IVF and PGT do not guarantee a pregnancy or a baby, and they may not be suitable or available for everyone. PGT requires that the specific genetic cause for NF in the parent is identified, i.e. the parent must have a known genetic diagnosis for NF. This is done via a genetic test which can take several months.
Understanding IVF costs
IVF can be expensive. Although Medicare rebates are available, it can be hard to find a clinic that charges only the Medicare fee or offers bulk billing while still providing all the services you need. There are a few bulk-billing IVF clinics in WA, but you may still have out-of-pocket costs in the thousands, as Medicare does not cover every cost involved with IVF.
These clinics don't always offer PGT services, which can limit your options. Clinics that do offer PGT are usually private and more expensive. You may still get a Medicare rebate for some of the costs, but the upfront cost and the out-of-pocket costs after the rebate are still sizable.
It should be noted that the actual cost of IVF varies depending on the needs of each individual and is affected by factors including age, fertility, services offered, and the number of cycles required.
A fertility specialist or a genetic counsellor can explain what treatments are recommended in your situation along with the costs associated with those treatments. Talk to your doctor about your reproductive goals and ask for a referral to an IVF clinic for more information.
Payment support and insurance cover
Some costs related to IVF may be covered by Medicare or private health insurance, but for many people it is still a costly process. You should contact Medicare to assess what rebates you are eligible for. Similarly, contacting your insurance provider is the best way to know if your private insurance provides any cover for IVF and related services.
Some IVF clinics may offer payment plans that let you pay in instalments, which can make the cost slightly easier to manage. Payment options can be different from clinic to clinic, and it is best to consult with the clinic staff about what payment options are available before proceeding to treatment.
New South Wales provides an additional $2,000 rebate for its residents towards IVF and related costs. To find out if you are eligible for this rebate visit the link here: Fertility Treatment Rebate by Service NSW
Other options
You may consider using donated sperm, eggs, or embryos to conceive through IVF. However, this means that the child will not be biologically related to one or both parents.
You may also consider adoption as an alternative. For information, support and counselling involving adoption in WA, you should visit the adoption support services website. Some people may choose not to have children.
Emotional Support Resources
Planning for a child can be stressful. Speaking with a genetic counsellor, psychologist, support group or other families affected by NF can help you and your partner navigate these decisions. You can reach out to organisations like NFAWA or the Children's Tumour Foundation of Australia (CTF) if you would like some support during this process. We host multiple events throughout the year to help individuals and families affected by NF connect with one another. Information about upcoming events can be found in the events section of our website.
Final Message
There isn't a single 'correct' reproductive choice for people with NF. The decision you make should be tailored to your personal circumstances, values, and the resources available to you. Taking the time to understand your options and seeking appropriate professional advice can help you make an informed decision that is right for you and your family.
You can read the sources listed below for more information regarding family planning and reproductive options for people with NF.
Sources and Further Reading
Thinking About Having Children for People with Neurofibromatosis brochure by NSLHD
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