Lupus and Motherhood – Ask a Question about Lupus (#LupusAwarenessMonth)

90% of persons living with Lupus are women. It is not surprising then that the question of pregnancy and motherhood while living with Lupus would come up. so often!

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I’m not a mum yet, but I look forward to the experience when the time is right. Because of certain physical challenges as a result of Lupus, I’ve always sectioned motherhood with possible fostering or adoption. However, I figured since the question of lupus pregnancy and childbirth  had come up a few times on here, I’d do some research and talk to a few moms while I was at it. This is the result of some reading and a week long conversation with a doctor, an obstetrician, a lupus mum and a normal mum.

You will notice that at this point, my initiation of the conversation is somewhat clinical. That’s the point I am at. I need your opinions and experiences to make this conversation more human for everyone. So please, join in in the comments section. Asante Sana!

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Pregnancy and motherhood are natural processes that can be both rewarding and challenging. A lot of women, not all, look forward to and enjoy the journey of motherhood. Some struggle with getting pregnant, others struggle with being pregnant, and a few struggle with being moms. Some have it easy, some don’t.
The same rules apply to motherhood while living with Lupus, with a few added risks and challenges.

Before you even conceive, you might  be wondering if there’s a chance you might pass on Lupus to your child. The answer is no. It is true that there is a genetic component to Lupus, meaning that you and your child’s genetic make up may be similar enough as to make you both susceptible to Lupus. However, there is not one specific lupus gene that you can pass on to your child.

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It is possible that you might not be able to conceive at all,  if your reproductive and endocrinology all systems are too adversely affected such as in the case of secondary polycystic ovarian syndrome and early menopause onset.

Conception and maintaining a pregnancy through the full gestational period might be harder depending on disease activity and the parts of your body affected. You should ideally have an honest conversation with your doctor and then chart out an action map.

Assuming that you can conceive, you will need to be aware that a lupus pregnancy has the potential to be a higher risk pregnancy due to the immunological aspects as well as due to organs affected i.e. In the case of kidney, cardiovascular or CNS dysfunction.

You will need to be in the care of your regular rheumatologist, as well as that of an obstetrician who specializes in high risk pregnancies and births.

Generally, doctors have found that, and this is more so for people living with Lupus, planned pregnancies have better outcomes. Planning your pregnancy around less stressful financial and career periods can help make things easier for mom. For Lupus moms, planning your pregnancy so conception happens at a time when the disease is not active or less active is a good idea.

You will need to stop taking certain medications for Lupus, if you are planning to conceive. There will be some medications your doctor may advise you to continue taking to continue managing your Lupus. Please consult with your doctors before taking ANY prenatal dietary supplements.

Once your pregnancy is confirmed, your doctors will check for

– Urinalysis – to check for protein in the urine

– Complete blood count

– Blood chemistry tests – to look at kidney and liver function

– Antiphospholipid antibodies – to check for risk of miscarriage

– Anti-SSA/Ro and Anti-SSB/La antibodies – to see if the fetus has a risk of heart block (neonatal lupus), in which case the doctor will request a fetal echocardiogram starting at 18 weeks

– Anti-DNA antibodies

– Complement levels

As with all other pregnancies and birth, things can go wrong. Knowing what can go wrong for the process involving a Lupus mum, should really not frighten you, but empower you so that you can make the right choices, and once you are pregnant be educated enough to note warning signs and get help for yourself and baby in time. So here’s a list of possible complications in lupus pregnancies:

Preeclampsia: this is when there’s a problem with placenta. If mum’s immune system experiences a sudden change, preeclampsia can develop in a lupus mum. Symptoms would be sudden increase in blood pressure, severe headaches and blurred vision. There might be protein in urine. This is a serious condition that requires immediate medical care to save mum and baby.

HELLP Syndrome: Hemolysis, Elevated Liver Enzymes & Low Platelets. Although HELLP usually develops before the pregnancy is 37 weeks along, it may develop in the week after the infant is born. It has a higher risk of occurring in women with preeclampsia and eclampsia.

Antiphospholipid Antibodies: These can cause problems with clotting of the blood.  If you have antiphospholipid antibodies, you may need to have an early delivery.

IntraUterine Growth Restriction: Slow Fetal Growth can occur because of lupus complications.

Impaired Kidney Function: due to active lupus, excess protein can spill into the urine (proteinuria), causing swelling (edema) in the feet, ankles, and legs.

Lupus Flares: increase in autoimmune activity with pronounced joint pains, fevers, rashes and organ dysfunction.

Preterm delivery:  the chance of giving birth before 37 weeks does appear to be more frequent in women with lupus than in otherwise healthy women. Women with lupus are always encouraged to arrange for their baby’s delivery at a hospital with a neonatal intensive care unit (NICU).

Fetal Loss: Loss of the fetus can occur in any pregnancy; however, spontaneous miscarriages and stillbirths are more frequent in women with lupus. The two greatest risk factors are a history of previous fetal loss and high levels of antiphospholipid antibodies. The risk of fetal loss also may be increased if: Lupus nephritis is active at conception; there is evidence of proteinuria, antiphospholipid antibodies, lupus anticoagulant, or hypertension; or the serum creatinine level is high.

Neonatal Lupus: Neonatal lupus is not true lupus; it is a rare condition associated with anti-SSA/Ro and/or anti-SSB/La antibodies from the mother acting upon the fetus. At birth, the baby may have a skin rash, liver problems, or low blood cell counts, but these symptoms disappear completely after six months with no lasting effects. The most serious symptom is congenital heart block, which causes a slow heartbeat. This is usually detected when the fetus is between 18 and 24 weeks old, and most infants eventually need a pacemaker.

If a mother has had one baby with neonatal lupus, there is an 18 percent chance that she will have another child with the same problem. The chance that the baby born with neonatal lupus will develop any form of lupus later in life, however, is very, very low.
Supplementary Information sourced from Lupus Foundation of America: Lupus.org

Beyond Pregnancy

Once you’ve passed the pregnancy stage, you will now have to juggle obligations and responsibilities of motherhood with the challenges of living with Lupus.

Important goals are to keep disease activity to a minimum and avoiding lupus flare triggers. So keep up with your body, be regular with your meds and doctors appointments, eat healthy, sleep enough, exercise regularly, avoid direct sunlight and uv rays, hydrate and so on.

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Useful tips for lupus mums:

Build a healthy support system. Have a few friends and family that you know you can absolutely count on in case of child care emergency.

If you can afford it, hire reliable child care and house work support.

Be organized. Motherhood is in itself a learn-on-the-go, get-surprised-a-lot kind of job. Having a measure of Organisation to your routine helps you anticipate challenges so you can have a lot more time and space to enjoy motherhood which translates to taking better care of your family.

If you have a parenting partner, honestly and constructively discuss possible challenges and work out together what to do in the event one comes up.

Ask for help when you need it. Learn to delegate and relinquish control of some situations, so that you’ll have enough time to rest and rejuvenate.

Are you a Lupus Mum? What other tips can you share with new and potential mums living with Lupus? Do you have tips that would especially be more useful to Lupus mums in Kenya? Please share! Sharing is caring!

P.S. It might be that after evaluating potential risks you chose not to go through pregnancy. That is a valid and very personal choice. 

You might choose to either focus on keeping your lupus life in balance. You might decide to do so while pursuing motherhood through surrogacy or adoption. Those too are valid choices. Remember, though, that you can only succeed in doing both by being aware of all risks and all options. So Know Lupus, Learn You!

Want to engage more with She Blossoms and Lupus Awareness related events, follow us on Facebook (She Blossoms) and on Twitter @Sheblossoms. The Lupus Foundation of Kenya runs a monthly support group in Nairobi. Contact them on Facebook or Twitter to join their update list.
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