When I first approached my team of doctors regarding my eagerness to embark on the journey to motherhood, the response was less than encouraging. Instead of hug’s and high-five’s, I received matter-of-fact manifesto’s with somewhat bleak outcomes. The words miscarriage, preeclampsia, preterm birth, and kidney failure - peppered the conversations during the first pre-pregnancy consults, leaving me with a lump in my throat and a major case of heartburn.
Even as little as 5 years ago, I was made to feel that lupus and pregnancy were about as compatible as oil and water. They don’t mix well, no matter how hard you try. Being the determined person that I was/am, I didn’t let that dissuade me from pursuing my desire. Instead, I researched, I prepared my body, my mind, and my heart, for the unknown path - and I visited as many doctor’s as I could until someone agreed to walk the path alongside me.
Thankfully, I found an amazing rheumatologist and two incredible high risk OB GYNs that decided to partner with me. At the time, my lupus was moderately stable. However, having a history of hypertension and kidney issues was a concern.
What was it like being pregnant with lupus, you ask? Did I have a healthy pregnancy? And can you? That is EXACTLY what this blog is intended to shed light on.
Let’s delve into the good, the bad, and the ugly about being pregnant with lupus.
Preparing For Pregnancy
First, let me remark that many lupus individuals can (and do) have successful pregnancies. This is a huge leap forward from the 1970’s when women with lupus were told to never conceive and even encouraged to have hysterectomies. However, there is no denying even in 2018, the risk can be inherently higher for women suffering with SLE, lupus nephritis, or the lupus overlap disease antiphospholipid syndrome.
Most (if not all) doctor’s would agree that the healthier you are at the time of conception, the better chances for a healthy pregnancy, delivery, and baby. If you are preparing to become pregnant, take a gander at these essential tips:
BE 6 MONTHS IN THE CLEAR: Your pregnancy depends on you and your health. It is often recommended that you wait until you are in remission, or your symptoms have been under control for at least 6 months. See your rheumatologist prior to becoming pregnant and have your blood levels checked. Kidney function, SSA & SSB antibodies, CBC, Anti-DNA, liver function, anticoagulant antibodies, and anticardiolipin antibodies are important to be checked before conception. Roughly 60% of women with active lupus can flare during pregnancy, but those that are in remission have a very low chance of flare.
FIND A GOOD HIGH RISK OBGYN & RHEUMATOLOGIST: Choose someone who is skilled in patient care of those with chronic diseases, someone you feel comfortable being open and honest with, and choose a doctor that is located at a hospital with a Neonatal Intensive Care Unit. Also, ask if you may tour the hospital Labor & Delivery Floor and NICU so you can get the “lay of the land” before delivery.
MAKE SURE YOUR MEDS ARE SAFE: Some lupus medications are not safe to be taking while trying to conceive and DEFINITELY not safe when pregnant. Some of these include: methotrexate, mycophenolate, cyclophosphamide, mofetil, leflunomide, and warfarin. Even Benlysta has not been tested enough to know if it’s safe during pregnancy. Be very open with your doctor regarding your medications, and how long you have been taking them. Certain medications can take months before they are fully out of your system and it’s safe to start trying to conceive.
PREPARE YOUR TEMPLE: When you have been cleared to starting trying, it is important to start taking a prenatal vitamin as soon as possible. Folic acid is important as well, and usually at least 400 mg is recommended. If you are a smoker, you need to stop. If you are a drinker, you need to stop. And if you are used to energy drinks, you need to cut the caffeine down to 200 mg or less (that is about one 12 oz cup of coffee). Sorry about that one.
SURROUND YOURSELF WITH POSITIVITY: Having a baby for the first time is stressful. Having a baby when you have lupus, can be especially stressful. It is important to keep yourself as stress-free as possible during this time. Ask your doctor about prenatal yoga, and make sure you are taking time every day to put your feet up, rest, and calm your mind. Listening to soothing music can help you relax, and is good for the growing baby too!
The Good About Being Pregnancy With Lupus
Thankfully, for all intent and purposes, I had a pretty normal pregnancy. This is true of many lupus mommies. This may be shocking, but, women can and do have enjoyable pregnancies with lupus. Some doctors believe patients even feel better during pregnancy!
Here are some of the other “perks” of being pregnant with lupus:
Being a “high-risk” patient means more ultrasounds! That means you get more sneak-peek’s at your cute little bundle of joy, more listens to that beautiful heartbeat, and more photos for the baby book!
Your hair and skin will never look better! Many people with lupus experience the perks of taking prenatal vitamins and have noticeably fuller hair and glowing skin.
Tired of the “prednisone bloat?” Guess, what? When you are expecting, you don’t have to stress about feeling bloated because you are pregnant! Time to buy some stretchy pants and relax! Whoohoo!
The hormones can help! There are been reports that lupus patients have less pain and generally feel better due to the pregnancy hormones.
The Bad About Being Pregnant With Lupus
At 37 weeks pregnant, I experienced pregnancy-induced hypertension. This is one of the risk factors associated with lupus and pregnancy. Even though less than 50% of women with lupus experience pregnancy complications, here are some of the increased risks:
Preeclampsia (pregnancy-induced hypertension or toxemia): This is a sudden increase in blood pressure which can result in protein in the urine and raised liver enzymes. This condition requires immediate medical care and careful monitoring of the mother and baby for intrauterine growth restriction or other fetal complications.
HELLP Syndrome: In a nutshell - Hemolysis (destroyed red blood cells), elevated liver enzymes, low platelets. This is a rare condition only occurring in about 1 in every 1,000 pregnancies. This condition is considered a medical emergency and presents similarly to preeclampsia.
Preterm Delivery: Typically, any birth occurring before 37 weeks is considered “preterm.” This tends to occur more in lupus patients, which is why it is important to deliver in a hospital with a NICU.
Antiphospholipid Syndrome: If you have been diagnosed with APS, it can interfere with the function and growth of the placenta. This may result in slow fetal growth. That is why it is important to have those levels checked before you conceive and be monitored carefully throughout your pregnancy.
Lupus Kidney Disease: If you have kidney disease or nephritis, it can increase the chance of complications during pregnancy.
Fetal Loss: Miscarriage and stillbirths can occur in any pregnancy, however, there is an increase in frequency among mothers with lupus. Those that have high levels of antiphospholipid antibodies, lupus anticoagulant, lupus nephritis, or hypertension should be monitored carefully.
After birth, some women experience an exacerbation of their SLE due to the stress of delivery, recovery from cesarean, and sudden shifts in prolactin, estrogen, and progesterone. This is a time, when you, as a new mom, need to ask for help.
It is okay to ask for help. The physical and emotional toll having a newborn, and giving birth can take - is huge.
Word of Encouragement
If you are currently at a place where you are worried about how pregnancy and lupus mix, I hope this blog has helped shed some light on the process. It is important to remember that all lupus patients vary, and not all women will experience complications.
My road to pregnancy was not an easy one, but as the old saying goes, “Anything worth having is worth working for” and I would not change a thing about what I went through because I have a healthy, wildly happy (now four year old) little boy. He may be a limited edition, due to my health, but I am blessed beyond words for the addition of him to my life.
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus, 2018.