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Can People with FOP Have Kids?

Published in FOP and Pregnancy 3 mins read

Yes, people with Fibrodysplasia Ossificans Progressiva (FOP) can have children, though it involves significant medical considerations and potential risks for both the parent with FOP and the child.

While it is physically possible for individuals with FOP to conceive and carry a pregnancy, it is crucial to understand the associated complexities. Pregnancy can impact the course of FOP, and the genetic nature of the condition also presents important considerations for offspring.

Considerations for Pregnancy with FOP

For individuals with FOP, navigating pregnancy requires careful planning and a thorough understanding of potential challenges.

  • Exacerbation of Symptoms: For some, but not all, patients with FOP, pregnancy can intensify existing symptoms. This may lead to new-onset ossification, which can further restrict mobility and cause disease progression. Flare-ups, characterized by inflammation and pain, may also occur and often necessitate prompt treatment with corticosteroids. The physical demands of pregnancy, including weight gain and postural changes, can also put additional strain on an already compromised skeletal system.

  • Genetic Inheritance: FOP is typically an autosomal dominant genetic disorder, meaning that a person with FOP has a 50% chance of passing the condition to each child they conceive. While many cases arise from new spontaneous genetic mutations, inherited cases do occur.

    • Genetic Counseling: Prospective parents are highly encouraged to seek genetic counseling to understand the risks of passing FOP to their children and discuss options for family planning.
    • Preimplantation Genetic Diagnosis (PGD): For couples undergoing in vitro fertilization (IVF), PGD can be an option to screen embryos for the FOP-causing gene mutation before implantation, though this is a complex and often costly procedure.
  • Medical Management During Pregnancy: Managing FOP during pregnancy requires a multidisciplinary approach involving FOP specialists, high-risk obstetricians, geneticists, and physical therapists. The goal is to minimize complications for both the parent and the baby.

    • Medication Review: Existing medications for FOP management need to be carefully reviewed and adjusted to ensure safety during pregnancy.
    • Monitoring: Close monitoring for new ossification, flare-ups, and changes in mobility is essential throughout pregnancy.
    • Delivery Considerations: The method of delivery may need careful planning, as limited joint mobility, particularly in the hips or spine, could make vaginal delivery challenging or increase the risk of injury. Cesarean section may be recommended in many cases to prevent trauma that could induce new bone formation.
  • Physical and Emotional Toll: Beyond the medical risks, the physical and emotional demands of pregnancy and parenthood can be substantial for individuals living with the chronic and progressive nature of FOP. Support systems, adaptive equipment, and home modifications may be necessary to accommodate the changing needs of the parent.

While it is possible for individuals with FOP to have children, the decision requires extensive discussion with medical professionals, careful planning, and a robust support system. Alternative paths to parenthood, such as adoption or surrogacy, may also be considered by families affected by FOP, as they can mitigate the risks associated with pregnancy and genetic transmission.