Pregnancy and Parenting With IH

Medically Reviewed by Neha Pathak, MD on March 22, 2024
5 min read

If you have idiopathic hypersomnia (IH) and are thinking about having a baby, you may wonder how this condition will affect your pregnancy. Will you pass it on to your baby? Will it be safe to take your medications while you are pregnant? Will your symptoms get worse, or better? Most importantly, can you safely manage parenting with IH?

The good news is it is possible to have a successful pregnancy when you have IH, and many people with IH are able to navigate parenting. Here’s what you need to know. 

The first step is to talk to your doctor. Topics you may want to discuss include:

The chances that your child may develop IH. It’s not known for certain if there’s a genetic connection. But about 1 in 3 people with IH have a family member with the condition or symptoms of the condition.

Medications you can safely take. Some IH medications, like modafinil, aren’t safe to take during pregnancy. Your doctor may want to lower your dose or have you stop taking them altogether as you try to conceive. Another option is to have you only take your medications when you’re in the “safety zone.” This is usually the first day of your period until the day before it’s possible that an egg could implant in your uterus. The idea is that you stop your medicines once there’s a chance that an embryo can be exposed to them. 

Decide what type of OB/GYN you’ll need. Many pregnant people with IH need to see a maternal-fetal medicine specialist. This is a type of OB/GYN who focuses on “high-risk” pregnancies. An MFM may be better able to:

  • Decide if it’s safe for you to continue your IH medications during pregnancy
  • Do frequent fetal ultrasounds to check on your baby if you do stay on your IH drugs
  • Monitor you for changes that may make you feel sleepier, such as low iron, B12, or folate levels

Sometimes, hormone-related changes will make you feel better. Other times, you may feel worse, especially if you need to stop your medications. Your doctor will watch you closely to make sure that your IH symptoms don’t get worse.

There are also other conditions you may have when you are pregnant that can impact your sleep. These include: 

  • Reflux
  • Sleep apnea 
  • Restless legs syndrome
  • Anemia

It’s important to let your doctor know if you feel sleepier than usual, so they can check for these conditions. They should also run frequent blood tests to check your iron, B12, and folate levels. If those get too low, they can cause anemia. 

There’s no clear answer as to whether you should stop your IH medications completely during pregnancy. Doctors don’t know for sure how safe they are to use, especially during the first trimester when your baby’s organs are forming. But if you don’t use them, your symptoms may worsen to the point that you’re no longer able to do things like work or safely drive.

There are some drugs, like modafinil, that seem to significantly increase the chance of birth defects. One study found that the likelihood of major birth defects was more than three times higher in fetuses exposed to this medicine in the first trimester of pregnancy. Other common IH drugs, like oxybates, are linked to an increased risk of miscarriage. But other medications used to treat symptoms of IH, like antidepressants such as SSRIs (like Prozac) or SNRIs (like Effexor), appear to carry much less risk.

If you decide to avoid drugs during pregnancy, you may turn to caffeine to help keep you awake instead. It’s best to limit your daily caffeine intake to 300 milligrams, or the amount in about three 6-ounce cups of coffee. More than that may pose risks to your baby.

Your IH shouldn’t impact your delivery. Just keep in mind that your sleep schedule may be disrupted while you are in the hospital. This could make your IH symptoms worse. You should let your hospital care team know in advance that you have IH, so they can create a specialized care plan.

Mothers with IH may also have a lower milk supply. It’s a good idea to speak to the lactation specialist at the hospital. They can provide advice on ways to raise your milk production. This may include:

  • Nursing or pumping eight to 12 times a day
  • Pumping your breasts for 5-10 minutes after your baby nurses to completely empty them
  • Sleeping flat on your back and wearing a well-fitting bra. This will lessen your chances of getting clogged milk ducts. 

At first, you’re likely to feel more tired than usual from lack of sleep. As a result, there are certain steps you’ll need to take to ensure your baby’s safety: 

Have someone help you with your baby. This is especially important during high-risk times, like changing, feeding, or even carrying your little one around. You can also reduce risk by doing things like changing your baby on the floor, instead of on a changing table, and giving them a sponge bath rather than a tub bath. 

Don’t sleep in the same bed as your baby. It’s not recommended for anyone, since you could accidentally roll over onto your infant, or they could suffocate in your bedding. But parents with sleep disorders such as IH face an increased risk since they may not wake up if their baby is in distress.

Sleep when the baby sleeps. This will help you be sure that you get enough rest. But if you tend to sleep very deeply, or to have sleep inertia, you may need to have someone else in the house with you to tend to the baby if they wake up and you don’t.

It’s important to also talk to your doctor to make sure that your IH symptoms are well controlled. Many medications that may have been considered off-limits during pregnancy are considered safe to use while you nurse, such as amphetamine/dextroamphetamine or modafinil.