If there is anything people with chronic illnesses know when it comes to conceiving a child, it’s that we don’t have the luxury of “oops“. Once my husband and I decided to expand our family beyond our two cats and hedgehog, we started planning 2 years in advance.
While it may seem like overkill to most, the caution is due to my (ever growing list of) underlying medical conditions as well as the medications I take on a daily and weekly basis. Before we were to even THINK of actually trying, we had to talk to my care team: PCP, rheumy and GYN.
Rewind to 2018 (simpler times, no?)
At some point in 2018, the date of which I don’t remember, I confirmed to my GYN that we wanted to start a family in about 2 years time. He raised an eyebrow and rolled his stool over to look at my chart. After clicking around he told me he would send me to a “maternal fetal specialist” for a consultation. I didn’t even know what that was but I nodded and took a mental note.
A quick Google search later and I can confidently tell you that a Maternal Fetal Specialist is a doctor that specializes in caring for persons who have complicated, high risk pregnancies. The realization of that hit the bottom my stomach, hard. No matter what, my pregnancy will be high risk. Right from the jump.
Pregnancy and Chronic Illness
At the time my hubs and I went to see the MFM (how cool am I, now I can abbreviate it), I was taking Coumadin 2.5/5mg daily, Actemra 162 mg via self-injection weekly, and Plaquenil 200mg daily. He spoke to us about my conditions and medication changes I would have to make. He answered all our questions and I felt super confident that when the time came, I’d be in safe hands.
Besides figuring out what medications were conception and fetus safe, we also had to take my health into account. Because my memory recall is always a bit foggy, I will just list my current chronic conditions as of today:
- Fibromyalgia
- Lupus (SLE)
- Antiphospholipid Syndrome
- Ankylosing Spondylitis
- Rheumatoid Arthritis
- Endometriosis
- Some undiagnosed vascular issue that I am currently being evaluated for
A quick break down:
In their own way, most of these issues can cause recurrent miscarriage, low birth-weight, preeclampsia, and preterm labor. Others, such as endometriosis, can cause infertility and miscarriage.
In general, for women with SLE, pregnancies should be planned 6 months in advance and have a higher risk for complications, such as preeclampsia. There is reduced fertility in women with RA, but interestingly for those who do succeed in conceiving, 50 to 70% of them see an improvement in their symptoms during their pregnancy. There is however, a 90% chance of having what is called a “post-partum flare” within the first 3 months of giving birth. Ouch.
Ankylosing Spondylitis doesn’t appear to adversely affect pregnancy, but beware, a post partum flare was seen in about 60% of patients, mostly affecting the peripheral joints like hands and feet. Endometriosis does appear to negatively affect pregnancy in some studies, particularly increasing the risk or premature labor, miscarriage, low birth weight, placenta previa, and preeclampsia. However, other studies say that endometriosis doesn’t increase the risk for any of these issues, so take it all with a grain of salt.
Antiphospholipid Syndrome is, in my opinion, the most complicated of them all. The treatment plan of which depends on whether or not the patient has had a prior thrombotic event (blood clot) or not, if they have laboratory confirmed relevant antibodies called aPL (the general term for a slew of antiphospholipid antibodies), and whether or not the patient has experienced previous fetal death, preterm births or spontaneous miscarriages. This one is not one to mess with, and should be closely followed by physicians that are well versed in it.
The general idea is to be informed of any issues you have, do research and ask questions about anything that isn’t clear to you. You should walk out of your doctor’s office feeling very confident that you and your future little one will be well monitored and cared for. If you don’t, keep pressing for answers or find a new doctor.
So we came up with a plan:
Because I have a mix of all those above, we had to have a solid timeline in place. I would need to be followed very closely if, and when we conceived. The risk of things going wrong is greatly increased, and there are many more variables at play. The more chronic issues you throw of the pile, the scarier. But we came up with a plan in regards to transitioning my medications.
- Stop Actemra in September 2020, 3 months prior to when we wanted to start trying
- Continue Hydroxychloroquine (Plaquenil) as it is generally deemed safe
- Take my IUD out in December of 2020
- Get busy
- When intrauterine pregnancy is confirmed, I start on a baby aspirin daily as well as LMWH (low molecular weight Heparin shots), a daily injection of an anticoagulant to prevent blood clots
Ok, scary, but great. We had a plan!
Of course, speak with your care team about making a plan for yourself because mine was very specific to my medical history, medications, and situation
Fast forward two years, and 2020 had different plans..
All Hell broke loose.
Like everyone else, we heard the inklings of a new flu-like virus making its rounds in China. Then Europe. Then it arrived here in America.
There isn’t much I can say about the first few months of the lockdown. I feel like I, as likely many others do, block it out of memory. I vaguely remember something about a toilet paper shortage, bread baking, and this show about tigers.
At some point in August some of the fog lifted and I remembered the plan. THE plan which would start rolling in a month’s time except, I wasn’t on ANY of the medications I had spoken to my MFM about. The hubs and I weren’t even sure if we wanted to go through with it.
Covid-19, the thing that shall not be named, was everywhere. No one knew what to make of it. No one knew how it effected regular people walking about, much less pregnant persons. We still don’t entirely know, but there have been some early studies.
So we called the doctor..
We reached out to my MFM to 1) talk to him about my medication changes and 2) ask him about pregnancy and Covid-19. I had transitioned from Coumadin to Xarelto at some point between appointments because I couldn’t be bothered with INR tests, stopped Plaquenil in 2019 due to it affecting my eyes, and am now on Enbrel. We discussed a plan and he assured us that although Covid-19 was new, it should be ok to go ahead with plans. I, of course, decided to do my own rouge-style research.
Pregnancy and Covid
As always, I make sure I only share evidence-based clinical resources and the most recent data available. (That being said, the data on this is constantly changing, so always do your own research as well). This time I will also be pulling data from UpToDate and DynaMed. Both are clinical evidence-based software systems that are used by more than 1.9 million clinicians in 190+ countries to provide point of care resources.
There are physiological and anatomical changes that occur in the body during pregnancy that can increase susceptibility to infection in general. Not to mention respiratory infection, in particular. Unfortunately, these changes makes things a bit harder for Covid-19 detection as well as maternal outcome.
If you focus on factors surrounding respiratory changes alone, pregnancy causes changes in estrogen, progesterone, and prostaglandin levels that cause nasal congestion symptoms (which can delay a Covid-19 screening). These hormones cause, as they are supposed to, narrowing of airways due to increased swelling (in an effort to capture more oxygen), decreased oxygen reserve for the pregnant person, and lung functional capacity decreases based on the mechanical effects of a growing uterus pressing up against the diaphragm. This obviously progresses until delivery.
But Wait, There’s More!…
As if the physiological changes weren’t enough, the immunology of pregnancy is also a cause for concern in regards to Covid-19. The maternal immune system goes through phases which are necessary to orchestrate a successful pregnancy.
Phase 1 is “inflammatory” which is a response to the zygote cells attaching to the lining of the uterus. The 2nd phase is “anti-inflammatory” which assists in fetal growth and development. Phase 3 switches back to “inflammatory” in the third trimester in order to prepare the body for labor.
A 3- Part Dance
This delicate dance leaves the pregnant subject in a more compromised state. Increased inflammation (called Maternal Immune Activation) during any of these phases caused by a viral infection can “affect fetal brain development and lead to neuronal dysfunctions and behavioral phenotypes that are recognized later in postnatal life”.
In regards to Covid-19, the CDC, (as of 11/2/2020) in multiple studies suggests that pregnant persons are at a significantly higher risk for severe illness requiring ICU admission, invasive ventilation, and a higher potential of dying, than non-pregnant persons.
This was after adjusting for age, race/ethnicity and underlying medical conditions. So actual legit numbers. In fact, pregnant persons aged 35-44 were 4 times more likely to require invasive ventilation and 2 times more likely to die than a non-pregnant person. There is also an increased occurrence of pre-term labor.
Id like to point out here that when they compared these findings to influenza, a meta-analysis found no increased risk of ICU admission or death for pregnant persons versus non-pregnant persons. My God. It’s almost like they are saying IT’S NOT THE FLU.
What about the fetus?
At this point there isn’t a lot of evidence pointing to vertical transmission (transmission of infection from parent to fetus) but there was a small study where Covid-19 IgG and IgM antibodies were found in blood taken from 6 newborns born to Covid-19 positive mothers. The finding was kinda nuts because the newborns tested negative for Covid.
IgG antibodies can pass freely through the placenta, but IgM antibodies are a bit too large, so that means the virus LIKELY went through the placenta and the fetus fought it off on their own. The other potential possibility is severe inflammation in the mothers body abnormally allowed the IgM to pass through to the fetus.
Just like you can imagine, the fetus having to fight off a virus while in utero is less than ideal. Besides sounding like something that could cause their development to go awry, there is something called “FIRS”, Fetal Inflammatory Response Syndrome, to worry about.
A Troubling Idea
I found a super interesting case study of FIRS associated with a mother who came down with Covid-19. The infant was born prematurely and presented with elevated inflammatory markers, thrombocytopenia (low platelets) , and elevated white cell counts who subsequently developed a fever and metabolic acidosis.
The infant tested negative for Covid-19 at multiple points as well as for any and all other possible pathogens but still showed signs of a systemic inflammatory response. It was extremely touch and go as the infant also developed respiratory failure and pulmonary hypertension, leading to it to require mechanical ventilation.
With proper care, the baby’s health slowly improved and was discharged after 22 days. The study hypothesized that this systemic inflammation occurred in response to the maternal viral Covid-19 infection without there being vertical transmission. This is something super important to take into consideration during a pandemic.
“Neonatal morbidities”
As of July 2020, there wasn’t any evidence of fetal or newborn children’s mortality (thank goodness) but it was associated with some morbidities such as low birth weight, respiratory distress syndrome, and premature birth.
In a study on the characteristics of newborns born to Covid-19 positive mothers it was found that babies born to Covid positive mothers were three times as likely to have desaturations and four times more likely to have poor feeding in comparison to newborns from negative mothers.
Another issue to keep in mind, is the most common symptom of Covid-19 is fever. Fever in women during pregnancy is associated with craniofacial/cardiac defects, adverse neurological outcomes, and ADHD in children. Obviously, a TON of more research has to be done on this, but…
The CDC reports 49,036 pregnant woman have tested positive since January 22nd, and we only have data on 6,965 live, completed pregnancies. The data is squiffy, but for 67% of those, the infections were noted in the third trimester. It’s too early to tell the long term damage this may have caused, and the sample size too insignificant.
This isn’t to speak of increased stress levels
As if there weren’t enough to worry about, I also found a study regarding thyroid hormone changes in early pregnancy along with Covid-19. It appears that a worldwide pandemic and the stress, anxiety, and depression it brings can alter thyroid function. The effect of what these thyroid abnormalities will have is unclear, and the extent of any stress on the body while in the first trimester is still something scientists still grapple with to this day.
There IS some good news right now
After the large number of peer reviewed evidence-based studies I read and after combing through UpToDate, DynaMed, and CDC.gov I found study after study looking at the outcomes of Covid-19 positive and Covid-19 negative pregnant people and there is good news.
So far, there does not appear to be an increase in miscarriage. Keeping in mind that we don’t have a lot of data on first and second trimester infections this is a spot of good news, but take with a grain of salt, like most things. The incidence of pre-term labor and C-sections have increased, but only by a few percentage points.
In fact, much of this is so new, that we still don’t know if developing in a Covid-19 positive parent will concretely cause low birth weight, fetal growth restriction, preterm rupture of membranes, stillbirth, postpartum hemorrhage, neonatal intensive care unit admission, or neonatal sepsis.
What about immunocompromised pregnant people?
As of yet, I have only found one study directly related to immunosuppressed mothers and Covid-19. It focuses on mothers with IBD, but in general, these patients have autoimmune issues and are generally on immunocompromising medications. The study found those were at higher risk and suggested maintaining any immunosuppression to avoid IBD relapse. It even detailed disease management/treatment plans in the face of a Covid-19 positive pregnant person.
Here are a couple cliff notes from that study:
- If IBD is in remission, withhold IBD drugs and monitor closely for relapse. Corticosteriods should be avoided
- If IBD is active or new onset, patients should be hospitalized for observation irrespective of severity of respiratory symptoms, corticosteroids should be avoided, and thiopurines should be avoided.
More on the guidelines can be found here.
I’m not surprised this is the only study I found. Most scientists and physicians will focus on the general population first, and then subsequent subgroups. It isn’t ideal, since those with compromised immune systems are more at risk, but it’s just how things go.
No need to be fatalistic
We don’t know if there will be long term effects of Covid-19 on children. We can only look at the MO’s of past SARS infections and give educated guesses, at best. In this case, it looks like, as of RIGHT NOW, as FAR AS WE KNOW, children born of Covid-19 positive parents *may be* born early, but are mostly void of any Covid-19 caused complication.
Will that always be the case? Heavens above, I hope so.
When it comes to pregnancy, chronic illness, and Covid-19, there is yet no concrete data that can erase all worries or confirm the worst. It is simple too early to tell and too complicated a weave. That being said, the decision to delay starting or adding a member to a family is, as it always has been, up to the family. My only hope, in this case, is that it be an informed decision. I also hope I provided enough information here to help with that.
For my husband and I, we chose to wait on starting a family not only because we find ourselves on the more cautious side, but we also unfortunately have run into financial restrictions/instability we didn’t have pre-pandemic. It was a really painful decision but it is for the best. If you are also in that situation, hear me when I say I hurt with you. Had it not been for the financial instability, we likely would have pushed forward with plans and hoped for the best.
Speaking of hoping for the best, I look forward to the Covid-19 vaccine. How it works, what the effects may be, and the newfound ability to hope for a more normal year ahead.
Until next time, I send you love, light, and warmth,
Lunabug