Pregnancy with Hydrocephalus: An Essential Overview

Pregnancy with Hydrocephalus: What to Know

Pregnancy is a life-changing journey filled with excitement and questions—and for individuals living with hydrocephalus, it can come with added layers of uncertainty. Whether you’re newly diagnosed or have lived with hydrocephalus for years, you may wonder how your condition—and any treatments like a shunt or endoscopic third ventriculostomy (ETV)—might impact pregnancy, delivery, and postpartum recovery. 

The good news? Many individuals with hydrocephalus have healthy pregnancies and deliver healthy babies. With proper planning, medical support, and open communication with your healthcare providers, a safe and joyful pregnancy is possible. 

Can You Get Pregnant If You Have Hydrocephalus?

Yes. Hydrocephalus does not impact fertility, and many people with hydrocephalus become pregnant without complications. However, your individual medical history, including the type of treatment you’ve had (such as a shunt or ETV), will help guide your care plan. 

If you’re considering pregnancy, talk with your neurosurgeon and obstetrician ahead of time so they can coordinate your care from the beginning.

Pre-Pregnancy Planning: Things to Consider

If you’re thinking about starting a family, here are a few important steps to take: 

• Schedule a pre-conception consultation with your neurosurgeon and OB-GYN. 
• Discuss your surgical history, including any shunt placements, revisions, or ETV/ETV-CPC procedures. 
• Review your medications to ensure they’re safe during pregnancy and breastfeeding. 
• Monitor your symptoms and understand your baseline so you can recognize any potential changes early. 
• Gather key details about your shunt, including the type, valve (programmable or fixed), setting, and configuration—such as a ventriculoperitoneal (VP) or ventriculoatrial (VA) shunt. Keeping this information organized can be especially helpful when coordinating care. HA’s mobile app, HydroAssist®, can help you store these details in one place and upload relevant imaging, making it easier to share a clear snapshot of your medical history with your neurosurgeon and care team. 

Hydrocephalus in the Baby: Is It Genetic?

It’s a common concern: “Will my baby have hydrocephalus, too?” In most cases, hydrocephalus is not inherited. While there are rare genetic forms—often associated with conditions like spina bifida or aqueductal stenosis—most people with hydrocephalus do not pass it on to their children. A genetic counselor can help assess any potential risks based on your medical history.

Pregnancy: What to Expect

Pregnancy causes changes in your body—including increased blood volume, fluid retention, and pressure shifts—that may affect individuals with hydrocephalus differently. Most people don’t experience shunt or ETV complications during pregnancy, but it’s important to know what to look for.

Symptoms to Watch For

Some symptoms of increased intracranial pressure can overlap with typical pregnancy discomforts. Contact your medical team if you notice: 

• Persistent or worsening headaches 
• Vision changes (blurred or double vision) 
• Vomiting not related to morning sickness 
• Trouble with balance or coordination 
• Extreme fatigue or unusual sleepiness 

Regular check-ins with your neurosurgeon during pregnancy can help monitor your condition and provide peace of mind.

Emergency Plan 

It’s helpful to create an emergency plan before labor. This should include: 

• A list of your symptoms and medical history 
• A summary of your shunt or ETV status 
• Contact information for your neurosurgeon 
• Instructions for what to do if you experience signs of increased intracranial pressure 

Share this plan with your obstetric team and have it on hand during labor and delivery, especially in hospitals unfamiliar with hydrocephalus.

Imaging Considerations

In some cases, imaging may be needed to evaluate a headache or a possible shunt or ETV complication. MRI is generally preferred during pregnancy and is considered safe, particularly in the second and third trimesters. CT scans are typically avoided during pregnancy due to radiation exposure and are usually only considered in life-threatening situations when an MRI is not available. Your care team will carefully weigh the risks and benefits and choose the safest option for you and your baby.

Delivery Considerations

Both vaginal birth and cesarean section (C-section) are possible for individuals with hydrocephalus. Your delivery plan will depend on your specific situation: 

• Shunt placement matters. If you have a ventriculoperitoneal (VP) shunt, care may be taken to avoid pressure on the abdomen. 
• Anesthesia planning is key. Spinal or epidural anesthesia is usually safe, but should be discussed with your neurosurgeon and anesthesiologist ahead of time. If you have a lumboperitoneal (LP) shunt, additional planning may be needed, as the shunt’s location can affect decisions around epidural or spinal anesthesia. Your anesthesiologist and OB-GYN should be fully aware of your shunt configuration. 
• Multidisciplinary care is ideal. Your OB-GYN, neurosurgeon, and anesthesiologist should work together on your birth plan. 
• What does the research say? Earlier medical literature suggested a higher risk of shunt malfunction during pregnancy. However, a more recent single-center study published in JAMA Network Open found no shunt malfunctions during 85 pregnancies that went to term. The study also showed that vaginal delivery was safe and did not increase the risk of shunt malfunction. Importantly, postpartum shunt malfunctions occurred in about 6% of individuals, highlighting the need for continued symptom monitoring after delivery. 

Also, confirm whether your neurosurgeon has privileges at the hospital where you plan to deliver or can be consulted if needed. 

“I have had hydrocephalus since I was six weeks old due to aqueductal stenosis, and I have a VP shunt. I was able to have three children vaginally and had a wonderful experience with all three. 

I met with a high-risk OB in advance, even though my OB felt very comfortable supporting me through pregnancy and delivery—I just wanted to double-check. After that visit, I decided to return to my regular OB and had such a smooth experience.

What was interesting is that during all three pregnancies, I experienced migraines—which I had never had before—so it was scary not knowing whether they were migraines or related to my hydrocephalus. However, the hospital and my doctors supported me with a plan, and everything turned out alright.

I am so thankful for HA for speaking openly about hydrocephalus, which helped me feel much more confident as I began that journey 13 years ago.” -Stephanie (Buffa) Vogt

Postpartum Recovery

After delivery, keep an eye on both physical healing and hydrocephalus symptoms. Hormonal changes, fluid shifts, and sleep deprivation can sometimes mask signs of increased intracranial pressure. Be sure to: 

• Know the symptoms of shunt or ETV complications 
• Stay in contact with your neurosurgeon 
• Get rest and ask for help when you need it 

Breastfeeding and Hydrocephalus

Breastfeeding is safe with a shunt or ETV. Hydrocephalus itself doesn’t interfere with nursing. If you’re taking any medications, consult your doctor or lactation consultant to ensure they’re safe while breastfeeding.

Mental Health and Emotional Support

Pregnancy and postpartum can be emotionally intense for anyone—but especially for people managing a lifelong condition like hydrocephalus. Past medical experiences, fears of complications, or anxiety about parenting can surface during this time. 

Don’t hesitate to reach out for support. Perinatal mental health therapists, social workers, or hydrocephalus support communities can provide a safe space to talk. You are not alone in this journey.

Support from Partners and Loved Ones 

Partners and support people can play a vital role by: 

• Learning about hydrocephalus and your specific care needs 
• Helping monitor symptoms and keep a record if something feels off 
• Advocating for you in medical settings 
• Offering emotional support and practical help postpartum 

Encourage your partner or loved ones to read this article and be part of your care plan.

Questions to Ask Your OB-GYN and Neurosurgeon

Bring these to your next appointment: 

• Will my shunt or ETV affect my delivery options? 
• Should I have extra monitoring in my third trimester? 
• What symptoms should I report right away during pregnancy? 
• Are there any limits to physical activity or positioning during labor? 
• Can you and my neurosurgeon communicate about my care plan? 

Helpful Tools and Resources

Staying organized and informed can reduce stress during pregnancy. Consider: 

• Using a symptom tracker, like HydroAssist®, to monitor hydrocephalus-related symptoms 
• Keeping a printed medical summary for appointments and emergencies 
• Joining support groups, like the Hydrocephalus Association (HA) Virtual Community Network meet-ups 

You Can Have a Healthy Pregnancy with Hydrocephalus

Having hydrocephalus doesn’t mean you can’t have a healthy pregnancy or enjoy motherhood. With the right medical team, early planning, and strong support, many people with hydrocephalus go on to experience smooth pregnancies and deliveries. 

If you’re planning for pregnancy or already expecting, don’t be afraid to speak up, ask questions, and build a care team that understands your unique needs. You deserve support every step of the way. 

Information you can trust! This article was produced by the Hydrocephalus Association, copyright 2024. We would like to thank Abhay Moghekar, MBBS, for his valuable contribution and expert input.

This article is designed to provide helpful information on the subjects discussed. It is not intended as a substitute for treatment advice from a medical professional. For diagnosis or treatment of any medical condition, consult your doctor.