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When life becomes a blur of sleepless nights, round-the-clock feedings, diaper changes, and newborn snuggles, it’s easy to put aside self-care and focus all of our energy on the new baby. While it might seem noble to sacrifice our own well-being, it’s not healthy for anyone—and those of us with Long QT Syndrome need some extra gentleness and care.  

If you’re having a baby and you have LQTS, here’s what you need to know about the postpartum phase.

What the Research Says

According to the Mayo Clinic, “Pregnancy and delivery aren’t associated with an increased risk of symptoms in women with Long QT Syndrome.” But after the baby is born, that changes—the risk goes up, especially for women with LQT2. There’s research to back this up.   

One study focused on the “genetic underpinnings” of cardiac events during the first 20 weeks postpartum. Researchers found that women with LQT2 were at a higher risk than women with other types of LQTS.

Another study compared the likelihood of having a cardiac event in the nine months before, during, and after pregnancy. The results showed that the risk of having a cardiac event during pregnancy was actually lower than it was before pregnancy. But in the nine months postpartum, the risk was higher than before. During the first six months, in particular, the data showed “a meaningful increase in the probability of a first cardiac event.”

As with the other study, women with LQT2 had more cardiac events than women with LQT1 or LQT3.  Importantly, the researchers noted that beta blockers “significantly reduced” the risk of having a cardiac event.

Even so, beta blockers are no guarantee. A different study analyzed the cases of two women with LQT2. Both were on beta blockers, and both had cardiac events in the months following childbirth—one 4 weeks after delivery, and one 8 weeks after delivery. But the researchers said beta blockers should certainly be continued, along with close monitoring.

It’s also important to note that not every woman with LQT2 in the studies had a cardiac episode. Some women go through the postpartum phase without any problems.

What You Can Do

Because of the increased risk, the Mayo Clinic says women “need careful monitoring” during the postpartum phase. Stay in communication with your care team, including your OB/GYN, electrophysiologist, and any other providers you see regularly.

Along with receiving proper medical care, you’ll also need to prioritize self-care at home. The SADS Foundation has several self-care suggestions for the first 40 weeks postpartum.

Some of the recommendations are part of routine LQTS care: Take all prescribed medications, and stay away from those on the Drugs to Avoid list. The CredibleMeds app is a useful resource, especially when searching for over-the-counter medications that are safe.

It’s also important to maintain a healthy diet. A key part of that is eating potassium-rich foods. While bananas might be the first thing that comes to mind, there are several other options that have even more potassium, such as sweet potatoes, yogurt, and butternut squash.

Adding omega-3s to your diet can also be helpful. You can find them in flaxseed oil, canola oil, and soybean oil. A few other sources include chia seeds, salmon, mackerel, walnuts, and spinach.

It’s best to avoid green tea and grapefruit. According to the SADS Foundation, in high amounts, they can prevent one of the heart’s ion channels from functioning properly. It’s also good idea to reduce sugar and avoid caffeine and alcohol—so ignore all the memes and jokes about surviving on coffee and needing a glass of wine.

These next recommendations might sound impossible with a newborn: Rest as much as you can, and keep your stress levels as low as possible. As difficult as they may sound, they are important, and there are steps you can take to make them a reality—you might even consider making a “postpartum sanctuary plan.”

You’ve probably heard the advice, “Sleep when the baby sleeps.” Do it—your body needs the rest. This is not the time to be “Supermom,” or to “bounce back.” It’s a time to slow down, ask for help, and lean on your family and friends. Give yourself permission to rest. If that’s hard for you, remind yourself that it’s for the good of your heart, and ultimately, for the good of your baby. Rest as if it’s your job. And while you’re at it, keep alarm clocks, phones, and other startling noises away from your resting spot.

Look for ways to cut out sources of stress. That might mean saying no to outside commitments, limiting visitors, or cutting back on social media. For me, it meant stepping away from the workforce to become a stay-at-home mom—I knew that trying to “have it all” would be too much for me to manage.

For the stress you can’t eliminate, take some time to figure out a healthy form of stress relief that works for you. After my daughter was born, I made it a priority to take a shower every night. It was so simple, but it helped me decompress after a long day, and it served as a soothing transition to the night ahead. Getting fresh air and doing yoga also helped. If your stress relief comes in the form of exercise, be extra careful with it.

If you receive treatment for postpartum depression, work with your care team to make sure your medications are safe for Long QT Syndrome.

You can find the full list of postpartum guidelines, along with other helpful information on pregnancy and LQTS, using this link.