- Navigating pregnancy and birth as someone with type 1 diabetes can be challenging.
- People with type 1 diabetes are at a higher risk for birthing complications like preeclampsia and insulin resistance.
- Black women are also at higher risk for pregnancy complications compared to White women.
When I was diagnosed with type 1 diabetes in 2008, like most with the condition, I was bombarded with information. In a blink of an eye, I was thrust into carb counting classes and meetings with diabetic educators. They taught me the basics like how to inject insulin and what diet to follow.
I thought that was all I needed to know to manage my condition. But I was wrong.
What Is Type 1 Diabetes?
Type 1 diabetes is an autoimmune disease characterized by high levels of glucose (sugar) in the blood. Glucose levels become elevated because the body mistakenly attacks healthy cells involved in the production of insulin, the hormone that controls the uptake of glucose by cells, which use it to fuel every function of the body.
There is much more to understand about type 1 diabetes than just insulin administration and food craving control. Diabetes affects most parts of your body and it changes over time. In the decade I’ve been diagnosed, my diabetes has drastically changed throughout the years.
I’m in my late 20s, and my body and hormones are shifting, as are my insulin needs and diabetes management. My mind is changing, too. I’ve been thinking a lot about my fertility. Though I’m not yet prepared to have a baby, I often think about how I should approach having a child as a diabetic. Because my early diabetes education didn’t even touch upon pregnancy, for many years I believed the worst: that conception would be impossible.
Lately, my head’s been racing with thoughts about family planning. Should I start getting healthy now for a future pregnancy? Should I freeze my eggs? Will I be able to take a baby to full term? And will I be able to have more than one child?
I’m so afraid of what having a child may mean for me as a Black, type 1 diabetic woman. According to a recent Centers for Disease Control and Prevention (CDC) report, in 2020, the maternal death rate for Black women was 55.3 deaths per 100,000 live births—2.9 times the rate for White women.
Expecting mothers with type 1 diabetes are at risk of developing a number of complications like preeclampsia (a pregnancy complication characterized by high blood pressure and signs of damage to another organ system, most often the liver and kidneys) and insulin resistance (when cells in your muscles, fat, and liver don’t respond well to insulin and can’t easily take up glucose from your blood). Other risks include miscarriage and serious birth defects.
To hear firsthand what pregnancy and giving birth is like as a Black woman with type 1 diabetes, I spoke to three women who’ve gone through it themselves.
‘C-section Wasn’t What I Had Envisioned for Myself’
Knowing the danger of having a baby while Black with type 1 diabetes, Ariel Lawrence, project manager and diabetes advocate, decided to see a Black OB-GYN throughout her pregnancy in 2020.
“I wanted a Black OB-GYN because I felt that she would fully see me, and value not only my life, but the baby’s as well,” she told Verywell. While her support system prioritized her protection, Ariel still struggled with anxiety throughout her pregnancy. “I ruminated on all the worst-case scenarios and potential for complications of premature death,” she added.
Lawrence had to maintain a strict routine while pregnant. She had to meet with diabetes educators weekly, significantly adjust her goal blood sugar level range and insulin regimen, and watch her blood sugar levels closely.
“It was intense,” she said. “During pregnancy, my insulin requirements increased drastically. While there were periods where I battled low blood sugars, as my pregnancy progressed, I became increasingly resistant to insulin.”
In late pregnancy, increased levels of estrogen, cortisol, and human placental lactogen can block insulin. That blockage is called insulin resistance. Glucose can’t enter the body’s cells, staying in the blood and making blood sugar levels rise.
Most people with diabetes are not allowed by doctors to carry a baby to full term. Expecting mothers with diabetes have high-risk pregnancies, which is why Lawrence and many other moms with type 1 diabetes have to follow a strict routine during pregnancy. The same goes for labor as well. Doctors want to control the labor and birth experience as much as possible, to ensure the baby’s and mother’s safety.
“I had a scheduled induction,” she shared. “ I knew I could have a vaginal birth with the induction, and though a C-section was a possibility, I didn’t prepare myself for that option because I didn’t want it to happen.” Lawrence researched the induction medication she would be given, and some of the stories were alarming.
“I tried to encourage myself,” she said. “But I was terrified.”
“After several hours of labor and intense contractions, it became clear that neither I nor the baby were responding well to the induction,” Ariel continued. “Though I was given medication to counter the severity of the contractions, the baby’s heart rate kept plummeting.”
The doctors tried three times to stabilize her but decided Lawrence needed a C-section. “I cried,” she said. “That wasn’t what I had envisioned for myself.”
Lawrence said her birthing team was supportive and understood her disappointment. They helped her emotionally and physically during the process, and she gave birth to a healthy baby girl who celebrated her first birthday on Feb. 13, 2022.
‘I Didn’t Want My Race to Determine the Way They Treated Me’
Alina Tillman’s first pregnancy was well-managed. But the 31-year-old’s second pregnancy in 2014 with her son was traumatic.
“I struggled a lot with my blood sugar levels,” she told Verywell. “My son was large in utero which threw off my diet, which affected my diabetes and mental state.” Tillman also battled depression throughout her pregnancy, and her doctors prescribed Zoloft. “The diabetes and depression piggybacked off each other,” Tillman shared.
“My medical care during pregnancy was subpar,” Tillman continued. “I was referred to a perinatologist, [physicians who handle high-risk pregnancies], and they were put in charge of my glucose management, which was the worst thing because they were unfamiliar with insulin pumps.” Tillman recalls being unable to get a hold of her practitioner for weeks at a time.
At the time, Tillman lived in Lansing, Mich., and had “already had experiences there that made me aware of the racial disparity there.” When filling out paperwork prior to seeing her perinatologist, Tillman chose not to share her race and ethnicity. “Out of fear, I didn’t want that to determine the way they treated me,” she said. It did anyway.
“There were a few times I would come in for stress tests where they made it very clear to me that they did not want to treat me,” she said. “And I do believe that it was because of my race.”
Tillman said she had a few racially charged incidents in her perinatologist’s office, some of which she still thinks about today.
“There was one particular nurse that expressed her disdain for having to be in the room with me,” she said. “She did not want to touch me, and was not happy about the fact that my 3-year-old daughter had to accompany me. When I made a complaint about it to the front desk, there was nothing they could do about it.”
Tillman’s birthing experience was painful and traumatic. “I had no idea what was going on,” she shared. “They broke my water without consent, which really upset me.”
In the first 24 hours of her labor, Alina’s blood sugars started to run higher than usual.
“I couldn’t get them down,” she said. “I began to swell at the ankles, and my doctors treated it like it was no big deal. They didn’t test for anything.”
Swollen ankles is often the culprit by poor blood circulation when you have diabetes, which could be indicative of serious issues such as congestive heart failure, kidney disease, or other diabetes complications.
Once she gave birth, Tillman’s son was in the neonatal intensive care unit for two weeks. During that time, she wanted to breastfeed him and expressed to her nurses that breastfeeding was important to her.
“But they wanted to get me on birth control as quickly as possible,” she said. “They said that because I had type 1 diabetes, that I needed to get on birth control.” The doctors required Tillman to get the shot before leaving the hospital two weeks after giving birth because “they did not want to risk me getting pregnant again.” Tillman’s nurses gave her a Depo Provera contraceptive shot.
“They said it wouldn’t dry up my milk, but it did,” she said. “I was unable to breastfeed my son there after.”
“They did not care about my blood sugars, they just wanted to get me in and out of there,” Tillman shared. “I think that people of color, especially Black people, are often blamed for the conditions that we’re experiencing. I just feel like we’re not taken seriously because our health is not as important to a lot of health providers.”
‘I Could Not Move Freely During the Birth’
Throughout her pregnancy in 2014, Phyllisa Deroze’s unborn daughter, Jalanah, saved her life countless times.
“I had hypoglycemia unawareness, meaning I wouldn’t know when my blood sugar levels were dangerously low,” she told Verywell. “Jalanah would kick me to let me know my levels were low.”
Deroze was not offered a continuous glucose monitor (CGM) during her pregnancy. CGMs can be a game-changing tool for people with diabetes, non-pregnant or pregnant, to help track their levels and establish patterns. “The physician assumed that I couldn’t afford a CGM, even though she knew that I’m a professor and doctor,” Deroze said. “It was never offered as an option.”
CGMs automatically track blood sugar levels, and they’re crucial for anyone with diabetes experiencing hypoglycemia unawareness, as they let the person know their levels at all times. Studies have shown that using a CGM during pregnancy is safe and beneficial for diabetic and non-diabetic pregnant women. Despite CGMs’ value for people with type 1 diabetes—pregnant or not—they are not commonly used, mostly because they are not cost-effective. With insurance, a CGM can cost hundreds, and without insurance thousands of dollars monthly.
Similar to Lawrence and Tillman, Deroze had to maintain a strict regimen and diet throughout her pregnancy. “I had to eat the same things at the same time every day,” she explained. “Diabetes loves order and routine, and bringing that into my life was a challenge.”
“The most significant experience I had in my pregnancy was giving birth,” Deroze continued. “I really wanted to have a water birth, but the doctors refused to let me because they had to monitor the baby throughout the birthing process.”
Deroze couldn’t have the kind of birth she wanted because of her diabetes. She felt restrained while giving birth, which tainted the experience for her.
“I had an IV in each arm, one for glucose and one for insulin,” she shared. “I could not move freely during the birth and that was a problem.”
Deroze has since built a platform, Black Diabetic Info, to give Black people with diabetes the information they need to thrive with this disease. And Jalanah is a happy and healthy 6-year-old.
What This Means For You
If you have type 1 diabetes and are thinking about pregnancy or are pregnant, Beyond Type 1 offers resources for understanding and managing your condition in every stage of the process. Representation in care also matters and can make the difference in feeling like a healthcare provider is hearing your concerns. A recent Verywell survey found that only half of Black respondents said they felt that their last provider was familiar with Black patients. If you want to find a Black healthcare provider for you as you navigate your pregnancy journey, you can search on this online directory here.