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Clinician support for pregnancy and safe baby care

for all parents with idiopathic hypersomnia or Narcolepsy Type 1 or 2

woman holding a smiling baby

We developed this page with the advice of OB/GYN, maternal fetal medicine, pediatrics, lactation, and sleep medicine experts.

Many person(s) with hypersomnias (PWH) are able to handle the challenges of parenting, but for others the severity of symptoms may make parenting extra difficult or impossible. You can help PWH consider important factors when deciding about parenting, pregnancy, adoption, or nursing.

Refer your patients to our patient-facing web page about pregnancy and safe baby care.

The evidence is mixed. Inheritance patterns are complex, and the genetics of idiopathic hypersomnia (IH) and Narcolepsy Type 1 and 2 (NT1 and NT2) aren’t well understood.

Since sleepiness and prolonged sleep seem to be at least partially familial, people with idiopathic hypersomnia (IH), Narcolepsy Type 1, and Narcolepsy Type 2 may be more likely to have children with other sleep disorders. The details aren’t yet known (Daly, 1959; Masri, 2012; Mayer, 1998; Nevšímalová, 1997).

Idiopathic hypersomnia

Familial frequency and inheritance patterns, if any, are largely unknown. However, limited studies report that about one third of people with idiopathic hypersomnia (IH) have a family member with similar symptoms, suggesting a genetic component (Bassetti, 1997; Anderson, 2007; Ali, 2009; Vernet, 2010).

Narcolepsy Type 1

Family studies including hundreds of people with narcolepsy with cataplexy (NT1) show it’s rare for family members to also have Narcolepsy Type 1. Experts believe the typical chance of passing it to a baby is quite low at 1-5%. (See related slides from Dr. Arnulf’s 2018 conference presentation.)

However:

  • Risk may be much higher in specific populations, such as people of Czech, German, Hong Kong, or Japanese descent (Guilleminault, 1989; Mayer, 1998; Nevšímalová, 1997; Wing, 2011; Yamasaki, 2016). This is likely related to HLA inheritance since some of these variants are known to predispose to Narcolepsy Type 1.
  • Risk may also be much higher in families with more than one person with Narcolepsy Type 1 (Ohayon, 2019).

Narcolepsy Type 2

Although some of the above narcolepsy studies included some people with Narcolepsy Type 2, the specific genetics of Narcolepsy Type 2 aren’t yet known.

Some people who have idiopathic hypersomnia or Narcolepsy Type 1 or 2 feel better during pregnancy. Others feel worse than usual. These changes may be related to hormones and may also vary by trimester. If you and the PWH decide to stop their hypersomnia medicines or lower their doses due to pregnancy, this may also worsen their symptoms. PWH whose symptoms become too debilitating due to pregnancy-related changes may need your help getting work or school accommodations or medical leave (such as FMLA and short-term disability).

You can refer them to our web pages:

Maternal-fetal medicine (MFM) is a subspecialty of obstetrics that is devoted to the monitoring and management of “high-risk” pregnancies. “High-risk” may be defined in a number of ways, but typically implies any maternal or fetal condition or complication requiring monitoring and care above and beyond the routine or the comfort level of a generalist OB/GYN.

PWH can have uneventful (“low-risk”) pregnancies, and their OB/GYN may feel that a consultation with MFM is unnecessary, especially if:

  • The OB/GYN does ultrasounds and fetal monitoring
  • The OB/GYN is experienced with hypersomnias
  • The PWH is otherwise healthy
  • The PWH isn’t taking any medicines

Why refer to MFM?

An MFM specialist can provide:

Risk evaluation and decision support

  • Counseling as soon as pregnancy is planned or diagnosed
    • Review of the potential risks of medicines on pregnancy and nursing
    • Review of the potential risks of a sleep disorder on pregnancy and nursing
  • Reassurance and guidance to the PWH and their other doctors

Testing

  • An early ultrasound to provide a reliable due date and exact gestational age at any given point in time
  • Ultrasounds to document the entire fetal anatomy and identify any anomalies (“birth defects”)
  • Predicting or diagnosing chromosomal or genetic abnormalities
  • Following fetal growth and observing fetal behavior as a means of assessing wellbeing, typically every 4 to 6 weeks
  • A variety of forms of fetal monitoring in the third trimester, especially for pregnancies with an increased risk for stillbirth

Fetal monitoring for pregnant PWH who continue with medicine

If a PWH is considering taking medicine during pregnancy or nursing, it may be helpful to consult MFM for a detailed discussion of the risks and benefits. If the PWH decides to continue medicines during pregnancy, consider using extra fetal monitoring because of the unclear association between hypersomnia medicines and birth defects, fetal growth, and stillbirth.

Pregnancy may cause changes that lead to worsened sleepiness, such as:

  • Anemia (low iron, b12, or folate).
  • Reflux, sleep apnea, and restless legs syndrome, which normally go away soon after pregnancy but may need treatment during pregnancy. (For more information, see Pien, 2004 and Silvestri et al, 2019.)

Many PWH use caffeine to help their symptoms. Experts generally recommend limiting daily caffeine to 200 to 300 mg (about 2 to 3 6-ounce cups of coffee) during pregnancy and nursing due to possible risks to the baby. Weigh the risks and benefits as you do for prescription medicines.

Study results are mixed on the effect of hypersomnias during and after delivery of a baby.

Studies in the U.S. and Europe have compared births for people with narcolepsy to a control population.

  • The U.S. study (Black, 2017) reported no differences in:
    • How the baby was delivered — spontaneous vaginal vs. induced vaginal, vs. Cesarean delivery
    • Baby’s gestational age at delivery
    • Baby’s weight at delivery
  • The European survey study (Maurovich-Horvat, 2013) reported similar results, except in how babies were delivered — people with narcolepsy with cataplexy were more likely to have a C-section

Cataplexy during delivery is rare, but it is more likely right after delivery due to the heightened emotions of childbirth. Take extra care when giving the baby to a person with narcolepsy with cataplexy for the first time.

Hospitalization and anesthesia may affect hypersomnia symptoms and appropriate treatment strategies — including both medicines and sleep schedules. See our web page “Clinician planning for anesthesia, hospitalization, and medical emergencies” to help your patient make a care plan well in advance of delivery or other hospitalization.

Many parents are very motivated to give their baby human milk through nursing or pumping and are happy to provide whatever milk they can produce. Consider referring PWH to a lactation consultant for additional support, as there are many tools ​to help nursing and pumping.

Low milk supply

PWH may have a lower milk supply if their sleep schedule doesn’t allow for frequent nursing or pumping. The more a parent nurses or pumps, the more milk they will make. Any parent who is unable to nurse their baby or pump at least 8 times in 24 hours is more likely to have a low milk supply.

To help raise milk production, parents can:

  • Record how often they nurse or pump, with a goal of 8 to 12 or more times every 24 hours
  • Be certain their baby is actively nursing by watching their jaw movements
  • Fully empty their breasts of milk by pumping all milk that remains after nursing
  • Continue pumping for 5 to 10 minutes past the end of milk flow

Plugged milk ducts and breast infections

PWH who have a high milk supply will have a higher risk of plugged milk ducts if their sleep needs don’t allow them to remove their milk often enough. This can lead to breast infections. Advise them to completely empty their breasts every time they nurse or pump and record how often they nurse or pump, with a goal of 8 to 10 times every 24 hours. Nursing or pumping more often is likely to further raise their milk supply.

Advise PWH to sleep flat on their back whenever possible and to make sure their bra fits their largest breast size well. Rolled towels can help them sleep on their back. Sleeping in other positions, where they may lay on their breasts, or wearing a bra that is too tight raises their risk of plugged milk ducts. This can lead to breast infections.

Medicines and human milk

Many medicines pass to human milk, whether the parent is nursing or pumping. For all medicines, it is important to weigh the potential risks against the known benefits of human milk and nursing, along with the benefits of the medicine for the parent’s symptoms. Each parent should make their own informed decision after discussion with their doctors.

These medicines are believed to be safe based on very small studies:

  • When taken as directed, the relative infant dose is less than 10% and within a range that is generally accepted as being ‘safe’ in the short term.
  • “A small study of four infants whose mothers were taking dextroamphetamine for ADHD found no problems in the health and growth of those infants up to 6-10 months of age. Babies that are born preterm and those under two months of age should be monitored for decreased appetite, sleeplessness, and irritability. … Some evidence suggests that large doses of dextroamphetamine could lower milk supply.” (Read more at MotherToBaby.org.)
  • In a study of 103 nursing infants, there were no reports of infant insomnia or stimulation (Pascoe, 2021).
  • In general for antidepressants, the benefits of human milk feeding appear to outweigh the small risk posed (UpToDate, 2021).
  • For more details specific to fluoxetine (such as Prozac), visit LactMed.
  • or more details specific to venlafaxine (such as Effexor), visit LactMed.
  • Studies of doses to treat depression (75 to 150 mg) find acceptably-low infant dosages
  • The typical dose of 10 to 50 mg used to treat cataplexy is substantially lower and would pass even less medicine to the infant
  • Read more at Drugs.com.
  • When taken as prescribed, methylphenidate, which passes into human milk at low levels, is not expected to cause problems. It’s generally undetected in the infant’s blood.
  • Reports on 5 babies, whose nursing parents were taking 35 to 80 mg per day showed normal infant weight, sleeping and feeding habits.
  • Read more at MotherToBaby.org.
  • A single case of a nursing parent taking modafinil showed that the infant received a weight-adjusted dosage of 5.3% of the parental dosage, which is considered acceptably safe (Aurora, 2018).

“Changes in sleep patterns have been observed in breastfed infants from exposed mothers, which may be consistent with the effects of sodium oxybate on the nervous system.” (European Medicines Agency’s Xyrem Summary 2022). However, given sodium oxybate’s short half-life and limited time in human milk, you may advise the following precautions to avoid exposing the baby:

  • In the evening, nurse or pump just before taking the first dose.
  • During the night, feed the baby with formula (or milk pumped when not exposed to oxybates). Throw out any pumped milk. However, this pumping should help improve the overall milk supply.
  • Wait at least 5 hours after the last oxybate dose before nursing or saving pumped milk again. Even though oxybate was on board during milk production, after 5 hours the level of oxybate in the milk should be down to a safe level.

For a summary of studies of sodium oxybate and human milk feeding, visit LactMed. The half-lives for both sodium and lower-sodium oxybate are reported for their metabolite (GHB). Therefore, it’s likely that lower-sodium oxybate (Xywav) behaves similarly to sodium oxybate (Xyrem) in human milk, but researchers haven’t yet studied that.

Note for extended-release oxybates (such as Lumryz): 

The time to elimination of the once-nightly dose from the body is similar to that for 2 doses of immediate-release oxybate. Therefore, infant exposure can likely be lowered with similar precautions, although there aren’t specific nursing data. Wait at least 9 hours after the once-nightly oxybate dose before nursing or saving pumped milk.

  • A study of 8 lactating parents each given a single dose of pitolisant showed a mean weight-adjusted infant dosage of 0.56% of the parental dosage, which is considered acceptably safe. To read more, visit LactMed.
  • A study of 6 lactating parents each given a single dose of solriamfetol showed a mean weight-adjusted infant dosage of 5.5% of the parental dosage, which is considered acceptably safe. To read more, visit LactMed.
  • The relative infant dose is less than 1%, which is considered acceptably safe.
  • However, antibiotics that are present in human milk may cause non-dose-related changes in bowel flora. Therefore, infants should be monitored for thrush, diarrhea, or other GI disturbances.
  • A study comparing the breastfed infants of nursing parents taking amoxicillin to those taking a macrolide antibiotic reported adverse reaction “in 12.7% of the infants exposed to macrolides which was similar to the rate in amoxicillin-exposed infants. Reactions included rash, diarrhea, loss of appetite, and somnolence” (Lactmed).
  • The lactation studies on clarithromycin are for short-term use as an antibiotic. The risks are likely to be higher for the chronic use required for treatment of hypersomnias.
  • “Unconfirmed epidemiologic evidence indicates that the risk of infantile hypertrophic pyloric stenosis might be increased by maternal use of macrolide antibiotics during the first two weeks of breastfeeding, but others have questioned this relationship” (Lactmed).

A parent with a hypersomnia is usually even more exhausted than most parents. In a European study of 249 mothers with narcolepsy, 60% reported that care of their baby was negatively affected by their symptoms (Maurovich-Horvat et al, 2013).

The symptoms disrupting care included:

PWH may need help to prevent accidents, such as falls or drowning while bathing, especially if they typically experience these symptoms.

The American Academy of Pediatrics Updated 2022 Recommendations for Reducing Infant Deaths in the Sleep Environment (Moon, 2022) generally advise against parents sharing a bed with an infant (1 year or younger), although it is safe to sleep in the same room. Bed-sharing could increase the risk of SIDS (sudden infant death syndrome), suffocation, or strangulation. Research has shown a high risk of infants being trapped or tangled in upholstered chairs, couches and on beds with extra pillows and bedding when adults fall asleep, especially if the infant is 6 months or younger.

People with impaired alertness, difficulty waking up, or using a sedating medicine have a risk of infant sleep-related death during bed-sharing that is more than 10 times higher than the usual risk with bed-sharing (Moon, 2022). Therefore, PWH are likely at very high risk if they:

  • Have uncontrolled hypersomnia symptoms, such as very deep sleep with difficulty waking or severe sleep inertia
  • Take sedating medicines like oxybates

How can you help reduce the risks of accidents?

  • Help get symptoms as well-controlled as possible
  • Advise PWH to get as much sleep as they need, including sleeping when their baby sleeps
  • Advise PWH to prepare ahead of time to have as much help with their baby as you both think they may need. For example, they may need to have someone else at home to respond to their baby when they’re sleeping, especially if they:
    • Take an oxybate medicine, such as Xyrem
    • Have very deep sleep or sleep drunkenness
  • Discuss accident prevention guidelines for people with seizures, who have similar risks as PWH (see this WebMD article); for example:
    • Lower the chance of baby falling by changing the baby on the floor rather than a changing table
    • Lower the chance of baby falling by using a sling or similar baby carrier, as long as the PWH can be alert to their infant’s movements (read more at Carrying Matters)
    • Lower the chance of baby drowning by sponge bathing instead of tub bathing if the PWH is alone and symptoms aren’t well-controlled
  • Advise PWH how to lower the chance of infant sleep-related death, including SIDS, related to falling asleep while feeding their infant. They can:
    • Sit on the floor (perhaps on a very firm cushion or mattress) or lie on a firm mattress (without any bedding other than a tight-fitting bottom sheet)
    • Avoid couches and armchairs if they might fall asleep because sleeping on couches and armchairs increases the risk for infant death by up to 67 times
    • Avoid slings or baby carriers if there is any chance they may fall asleep or not be alert to their infant’s movements.
    • Place their infant back on a separate sleep surface as soon as they finish feeding them or as soon as the PWH wakes up
    • Have another awake and alert adult in the room
    • Have a partner or another helper bottle feed baby
  • Based on the 2018 HF conference presentation by Isabelle Arnulf, MD, PhD, HF medical advisory board member
  • Maternal-fetal medicine review and approval by Christopher T. Lang, MD
  • OB/GYN review and approval by Elezabeth Young, MD
  • Sleep medicine review and approval by Lynn Marie Trotti, MD, MSc and Isabelle Arnulf, MD, PhD, members, HF medical advisory board
  • Pediatric review and approval by Kiran Maski, MD, MPH, HF medical advisory board member
  • Lactation consultant review and approval and additional contributions by Valerie Vanderlip, IBCLC 
  • Lactation consultant review and approval by Sarah Briggs Williams RN, BSN, IBCLC
  • Contributions by Jodi Godfrey, PhD

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