Living with a lymphatic malformation (LM) or a complex lymphatic anomaly (CLA) does not automatically prevent pregnancy or family life. Many women and men with lymphatic conditions go on to have healthy children. Because lymphatic conditions vary widely in type and severity, pregnancy and family planning decisions should always be individualized and guided by experienced care teams.
Can people with LMs or CLAs have children?
Many people with LMs or CLAs—women and men—can safely have children. However, some individuals may be advised to delay or avoid pregnancy depending on their medical situation.
Pregnancy may be discouraged or postponed when:
- The lymphatic condition affects the lungs, heart, chest, or abdomen
- There is a history of severe fluid buildup such as pleural effusions or ascites
- A complex lymphatic anomaly with higher medical risks.
- Pregnancy could significantly worsen symptoms or pose serious health concerns
- Certain systemic medications cannot be safely discontinued
Early counseling with an experienced care team can help clarify risks, timing, and available options.
Pregnancy considerations for women with LMs and CLAs
Pregnancy causes normal changes in hormones, blood flow, and fluid balance. Some women with lymphatic conditions may notice:
- Increased swelling or fullness
- Temporary enlargement of affected areas
- Changes in pain or discomfort
- Fluid-related symptoms, especially in those with CLAs
For many, these changes are mild and improve after delivery.
Fertility and family planning for men
Lymphatic malformations and CLAs do not usually affect male fertility, and most men can biologically father children.
Men may benefit from counseling if they:
- Have a complex lymphatic anomaly
- Have pelvic, abdominal, or chest involvement
- Are receiving or have received systemic treatment
- Have fertility or medication-related concerns
Sirolimus, fertility, and pregnancy
Expert consensus indicates that sirolimus does not appear to cause permanent infertility in women or men. Menstrual cycles and sperm production often recover after stopping treatment. Sirolimus is:
- Usually stopped before trying to conceive
- Not typically recommended during the first part of pregnancy
- Adjusted or stopped in coordination with your healthcare team
Medications aimed at systemic treatment of LMs or CLAs – such as sirolimus, alpelsib, trametinib, thalidomide, or other targeted therapies – are generally recommended to be stopped 3 to 6 months before trying to conceive.
Pre-pregnancy counseling is especially important for individuals considering or currently receiving these therapies. Do not stop or change medications on your own—always discuss plans with your medical team.
Sirolimus and menstrual health
Some women taking sirolimus may experience changes in their menstrual cycle, including:
- Irregular periods
- Pain with menstruation (dysmenorrhea)
- Development of ovarian cysts
These effects are often reversible after stopping the medication.
Pregnancy care and delivery
Most women with LMs or CLAs receive routine obstetric care. In some cases, the healthcare team may also include:
- An obstetrician
- A maternal-fetal medicine (MFM) specialist
- A lymphatic or vascular anomalies specialist
Most women can deliver vaginally. Cesarean delivery is based on obstetric reasons, not the woman’s lymphatic diagnosis alone.
After delivery
After birth, hormone and fluid levels gradually return toward baseline. Some individuals experience:
- Temporary swelling that improves over weeks to months
- A return to pre-pregnancy symptom patterns
Your care team will discuss:
- When and how to restart medications
- Breastfeeding considerations
- Follow-up care for both parent and baby
Helpful resources and references
You may want to consider sharing the following if your doctor is not familiar with lymphatic malformation.
- VASCERN-VASCA Consensus Statement: Sirolimus and Fertility
- Pregnancy & Family Planning in Vascular Anomalies – Patient Booklet by the European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN)
- Pregnancy and PIK3CA-Related Overgrowth Spectrum: New Insights from Alpelisib Treatment
