Pregnancy is a beautiful journey. For mothers who have a chronic illness, pregnancy can be nerve-wracking and overwhelming. My 2 pregnancies were different and so were the postpartum period. My chronic illness surely made them difficult. While I was navigating my pregnancy journey, I had the idea to work on this topic after I got back to work. This is why I reached out to Paul Quinn, Ph.D., CNM, FACNM, one of the only US male midwives / a Certified Nurse Midwife for almost three decades and author of Prenatal Possibilities, the blueprint for families expecting a child.
He has shared his knowledge about planning + getting pregnant and maintaining a healthy pregnancy, all while maintaining a chronic illness. If you read through the whole article, you will know how pregnancy can be different with a chronic illness, how to maintain the pregnancy with your chronic condition, and his best tips for the whole pregnancy journey. Keep on reading!
How to Prepare for Pregnancy with Chronic Illness:
- 1) How is pregnancy different for someone who has a chronic illness?
- 2) What should they do differently from a normal healthy mother?
- 3) What are the 5 things they should be cautious about?
- 4) How can they plan for a healthy pregnancy and delivery?
- 5) Last but not least, what’s the most important advice you can give a mother with a chronic illness?
1) How is pregnancy different for someone who has a chronic illness?
Women with chronic health conditions can and do have healthy pregnancies and healthy babies. A woman’s body does a great job caring for her baby during pregnancy. Suppose a woman has a chronic health condition. In that case, she may need some extra help from her healthcare providers to manage her condition and treatment (including prescription medicine) before, during, and after pregnancy. Chronic health conditions increase a woman’s risk for certain pregnancy complications.
However, careful treatment from healthcare providers can help a woman manage her condition to help you have a healthy pregnancy and a healthy baby. Chronic health conditions can increase your risk for:
- Infertility (or having trouble getting pregnant).
- Premature birth (birth before 37 weeks of pregnancy; babies born prematurely are more likely to have health problems than babies born on time).
- Birth defects. These are health conditions present at birth that change the shape or function of one or more body parts. Birth defects can cause problems in the baby’s overall health, how the baby’s body develops, or how its body works.
- Pregnancy loss, like miscarriage and stillbirth. Miscarriage is the death of a baby in the womb before 20 weeks of pregnancy. Stillbirth is the death of a baby in the womb.
Chronic illness poses some challenges for pregnancy. First, there are many chronic illnesses a woman can manage, each with its unique challenges. For example, a woman may be a diabetic or have asthma that can be managed with lifestyle modifications and a medication regimen. Or, she may have illnesses like lupus, multiple sclerosis, or obesity that pose their own unique set of challenges that can complicate pregnancy.
One of the first concerns with chronic illnesses is whether pregnancy is an option for a woman. Despite the desire to become pregnant, some diseases may pose significant clinical challenges that would make pregnancy unsafe for a woman or the baby. For example,
- specific cancers (i.e., some invasive breast cancers, endometrial or ovarian cancers, liver cancers),
- complicated valvular heart disease,
- insulin-dependent diabetes with complications,
- uncontrolled hypertension (high blood pressure),
- HIV or active AIDS,
- ischemic heart disease,
- peripartum cardiomyopathy,
- uncontrolled sickle cell disease,
- a recent stroke,
- systemic lupus,
- platelet disorders,
- recent solid organ transplant,
- bariatric surgery within two years,
These conditions, or the medications used to manage or treat them, may have a significant impact on a woman’s physical ability to both conceive or sustain a pregnancy. Further, the drugs used to manage or treat chronic illnesses may interfere with ovulation and conception or actually be teratogenic (i.e., deadly to a fetus).
Some chronic illnesses can interfere with the ability of a woman to become pregnant. For example, heart disease, diabetes or thyroid disease can suppress ovulation. Autoimmune disorders can interfere with a woman’s ability to conceive. Other diseases like poorly controlled diabetes, severe high blood pressure, lupus, kidney disease, overactive or underactive thyroid gland (i.e., hyper or hypothyroidism), and antiphospholipid syndrome (APS) can interfere with a woman’s ability to sustain or maintain a pregnancy and could contribute to miscarriage.
2) What should they do differently from a normal healthy mother?
A pregnant woman with a chronic illness can anticipate more frequent visits with her obstetrician or midwife to monitor the progress of the pregnancy, the baby’s growth, and the presence of any complications. Depending on the nature of the chronic illness, a pregnant mother may require additional follow-up visits with specialists like a cardiologist, endocrinologist, rheumatologist, or psychiatrist. Specialty physicians may also require additional diagnostic testing or imaging as part of a comprehensive surveillance plan in collaboration with a woman’s obstetrical providers.
Pregnant women with chronic health conditions can also anticipate frequent blood work. Laboratory blood work is a part of routine prenatal care, but certain chronic medical conditions can predispose women to anemia earlier in pregnancy, electrolyte imbalances, or erratic blood glucose levels. The combination of pregnancy and chronic illness can also impact other organ systems, especially the kidneys, so a urinalysis or a 24-hour urine collection may be indicated.
Diagnostic imaging has become a gold standard for obstetrical care, especially ultrasonography. Ultrasound is used to evaluate the amount of amniotic fluid inside the uterus, to evaluate the size of the baby, the amount of fetal growth, and the integrity of the placenta and uterine structures. Chronic illness can impact the amount of amniotic fluid produced by the baby, limit the baby’s growth over time, or limit the amount of blood flow to the placenta and its vessels. Women with chronic illnesses can anticipate additional sonograms throughout pregnancy.
Further, fetal surveillance also includes using a fetal monitor to record the baby’s heart rate variability over a 20- or 30-minute period (i.e., a non-stress test or NST). Under normal circumstances, a baby’s heart rate will fluctuate from minute to minute, often with accelerations in the heart rate intermittently. Women with chronic illness can anticipate more frequent NSTs to evaluate the baby’s status and its ability to withstand more time within the uterus and eventually
the stresses of labor.
Healthy women with a normal, healthy pregnancy anticipate delivery of their baby by the end of nine months or 40 weeks. Pregnant women with a chronic illness, however, do not often have that luxury. Each week is a waiting game to evaluate the previous week’s clinical events and determine if the pregnancy is safe to continue for another week or month.
Early delivery of a baby, including a premature birth, is common and a reality for many women managing chronic illness and pregnancy. At any time during the pregnancy, a situation can develop for the mother where the combination of chronic disease and pregnancy could jeopardize the mother’s health or the viability of her baby. Anxiety and fear are also common as pregnant women with chronic illnesses navigate their pregnancy week by week with an unknown or uncertain outcome.
Because pregnancy for women with chronic illness is unpredictable and its course unforeseeable, women with chronic illness have to navigate their pregnancies by anticipating the unexpected. There is no advanced planning for these women. Although delivery will occur at some point, women with chronic illness do not know if that will be early in the pregnancy or at full term, by vaginal birth or Cesarean section, or if there will be complications for themselves or their baby. The number of women with chronic conditions in the U.S. is increasing, and sadly, so are the statistics for maternal mortality or morbidity. Regardless of how adherent a woman is to her treatment plan, diet, medications, follow up or monitoring regimen, the unexpected can still occur and pregnant women with chronic illness need to prepare as best as possible for them.
3) What are the 5 things they should be cautious about?
Pregnant women with a chronic illness need to be monitored for the same warning signs that women with a normal, healthy pregnancy do. However, pregnant women with chronic illness need to act immediately if any of these symptoms occur and not wait to notify their obstetrical provider. These warning signs include:
- A change noted in the pregnancy or with the baby, like a decrease in the baby’s movements or kicks (or no movement at all), suddenly breaking their water or leaking fluid from the vagina, persistent pain, tenderness, or redness to the abdomen that does not go away or come in waves like contractions, or a sudden onset of abdominal pain that abruptly vanishes.
- The development of new symptoms like swelling to the hands and feet, decreased urination, fever, visual changes, increased thirst, or decreased appetite.
- The onset of unexplained symptoms like sudden vaginal or rectal bleeding, intermittent aching or cramping to the lower abdomen, a persistent or worsening headache that does not go away with rest or over-the-counter analgesics.
- The development of nausea, vomiting, diarrhea, sharp right upper abdominal quadrant pain or sharp pain across the lower abdomen.
- Starting any new medication, including herbal supplements, traditional or cultural remedies, over-the-counter medication or prescription medications, before having a conversation about their use and indications with the obstetrical provider.
4) How can they plan for a healthy pregnancy and delivery?
A woman needs a team of healthcare providers who work together to give her the best care to manage chronic illness as best as possible during pregnancy. This team is led by the obstetrician or midwife (or a collaboration between both), and the specialists who can manage the specific chronic illness. Because there is more frequent and targeted surveillance and monitoring of both the mother and her baby, the care team may expand to include other providers who help a pregnant woman with a chronic illness manage her condition before, during and after pregnancy. Since preterm delivery of the baby could occur, this care team may also include specialists for the baby, like a neonatologist or pediatrician.
Preparation for a healthy pregnancy and delivery should begin before a woman with a chronic illness tries to become pregnant. She should discuss her birth plans with her medical providers and any specialists she sees to manage her chronic illness and have an honest discussion about her current medical status, inviting their input and recommendations on her resilience to withstand a pregnancy and eventual delivery. Her specialists and obstetrical provider then become one comprehensive care team to manage her journey through conception and eventually, pregnancy.
In addition, the care team works together to make sure any treatment pregnant women with chronic illness receive, especially prescription medication or treatment, is safe for her and her baby before, during, and after pregnancy. In addition to physicians, midwives, and other advanced practice clinicians, this comprehensive care team may also include mental health professionals, including psychiatric nurse practitioners, psychologists, social workers, therapists and counselors; a doula (a trained professional who provides information and physical and emotional care and support to women before, during and after childbirth, including continuous support through labor and birth); a lactation consultant (a person with special training to help women breastfeed); a diabetes educator (someone with special training to help people with diabetes control their blood sugar) and possibly a registered dietitian (a licensed health care professional who helps people eat healthy foods to help them live a healthy life).
5) Last but not least, what’s the most important advice you can give a mother with a chronic illness?
Plan ahead! Start the process before you ever conceive. Indeed, the sooner a woman with a chronic illness decides that having a baby or starting a family is in her future, she should discuss her desires with her primary care practitioner and any other medical specialists. She should discuss her timeline for pregnancy, when she hopes to have a baby or become a mother, regardless of whether she has a partner at that time or not. The health care providers can then create a comprehensive plan of care to help get the chronic illness under control and assist a woman to make changes in her life to get ready for pregnancy. To begin the process, a woman with a chronic illness needs to:
1) Work with her primary care practitioner to develop the comprehensive care team. This way, all the providers will know about other providers on the team and how to contact them. They can all share critical clinical information that will inform each specialty or discipline about the plan of care and the woman’s current clinical status.
2) Get a preconception checkup. This is a medical checkup a woman receives from her obstetrical provider before pregnancy to help make sure she is healthy when she becomes pregnant. This checkup needs to be done before pregnancy occurs. At this checkup, the obstetrical provider will evaluate a woman with chronic illness’s need to ask your provider about taking folic acid to help prevent birth defects of the baby’s brain and spine, called neural tube defects. The obstetrical provider will also ensure a woman’s vaccinations are up to date to help protect her from infections that can cause problems during pregnancy.
3) Have a frank discussion about the timing of a future pregnancy. The care team will assist a woman with chronic illness to determine to safest time to think about the pregnancy and assist them to choose birth control until she is ready for pregnancy. This can help prevent an unplanned pregnancy during times when a woman’s chronic illness could cause problems for her or her baby. Birth control is reversible and can assist with planning a pregnancy to reduce the risk of
4) Discuss any current medication or treatment regimens to determine if the current plan is for a woman with chronic illness and her baby when she does get pregnant. Working with her care team allows a woman to make decisions about treatment, including prescription medicines. No prescription medications should be started or stopped without talking to your providers first.
Likewise, any provider who may prescribe a new medication should be aware that a woman is trying to become pregnant, and that the obstetrical provider is aware and approves of any new medications introduced into the treatment regimen. This includes prescription medicines, over-the-counter medicines, supplements and herbal products.
5) Get regular treatment for your condition. A woman with a chronic illness should keep seeing all the providers who treat her condition. She should not stop going to checkups because she is going to prenatal care checkups also.
6) Don’t forget about after the baby is born. Make a postpartum care plan. This is a plan that helps a woman with a chronic illness prepare for her medical care after giving birth. A woman’s obstetrical provider will assist her in scheduling her first postpartum care checkup that will determine if she is recovering well from labor and birth and make sure there is a plan for choosing birth control and breastfeeding or other infant feeding options, along with checking to see if conditions or complications that developed during pregnancy have improved or were adequately addressed.
7) Plan for breastfeeding. Breast milk is the best food for babies in the first year of life. It helps babies grow and develop. Most women with chronic health conditions can breastfeed. But some conditions and some medicines a woman takes for a chronic illness may make breastfeeding unsafe for her baby. A woman should have a discussion with her healthcare team to decide about breastfeeding.
If a woman is not planning to breastfeed or is unable to, she should ask her provider about feeding her baby donor breast milk or formula. Donor milk is breast milk that a woman donates to a milk bank. A milk bank receives and stores donated breast milk, tests it to ensure it’s safe, and sends it to families of babies who need it. Donor breast milk is prescribed by the baby’s healthcare provider (usually a neonatologist or pediatrician). It has all the benefits of a woman’s own breast milk. Formula is a milk product a woman can feed her baby instead of breast milk.
8) Get support. Trying to have a baby and being pregnant can be very overwhelming. A woman with a chronic illness may find it helpful to talk with someone who has already been in her situation. A support group can connect her with others to discuss what she may be feeling, experiencing, and thinking.
9) Listen to her body. Being pregnant causes a number of changes in a woman’s body. It may be harder for her to understand what is happening or to pick up on bodily cues that she used to rely on. If something does not feel right (especially if any warning signs occur), she should talk to her obstetrical provider immediately.
10) Try to enjoy the pregnancy. Being pregnant and having a chronic illness may often require a significant amount of medical management. That may cause a woman to worry about her baby and make it harder for her to enjoy and appreciate being pregnant. Although it may be difficult at times, a pregnant woman with a chronic condition should still take whatever time or moments she can to savor and relish the experience of being pregnant as often as possible.
Editor’s Note: I can personally attest to each and every piece of information written here. My second pregnancy was a high-risk pregnancy with chronic illness and gestational diabetes. I had a team of health care professionals (comprehensive care team), including my primary care doctor, maternal-fetal specialist, geneticist, diabetes educator, nutritionist, mental health therapist, and physical therapist. I had to go through all the tests mentioned above frequently. And we had to plan for the delivery before reaching my body’s limit. If you are going through something similar, contact me. I am here to talk!
Dr. Paul Quinn PhD, CNM at a glance:
- One of the only US male midwives / a Certified Nurse Midwife for almost three decades
- Director of Women and Children’s Services at The Valley Hospital in Ridgewood, New Jersey
- Professor in obstetrical nursing and nursing research at Dominican University New York
- Author of 5 books, all found HERE on Amazon.
- His new book, Prenatal Possibilities, is THE blueprint for families expecting a child. https://prenatalpossibilities.com/
- You can follow him on Instagram at @Drpaulquinn
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