Elana, 36, was a teenager when she was diagnosed with immune thrombocytopenia, also known as idiopathic thrombocytopenic purpura or ITP. ITP is a blood disorder in which you have fewer than average platelets. Platelets are the part of your blood that help stop bleeding when you get a cut or injury.
ITP in adults appears to happen because of an autoimmune response that prompts antibodies to attack platelets—and sometimes the cells that produce them—for an unknown reason, according to the Genetics Home Reference with the National Institutes of Health. Most people with ITP don’t experience any symptoms, but when ITP symptoms do show up, they can include bruising, nosebleeds, and bleeding under the skin, which shows up as red and purple spots called purpura, according to the Genetics Home Reference. In more severe cases, there may be gastrointestinal bleeding, very heavy periods, or—rarely—bleeding inside the skull. The Genetics Home Reference estimates that ITP affects approximately 4 out of 100,000 children and 3 out of 100,000 adults. Children usually recover after a few weeks, but as in Elana’s case, in adults the condition is often chronic.
Like many people with ITP, Elana has a family history of the condition. But it was only when she and her husband started to have children that it really affected her life. Here, Elana talked to SELF about how she factored her ITP into her approach to pregnancy, how it impacted her delivery options, and how she’s doing today.
I found out I had ITP after doing routine blood work at a doctor’s visit when I was in high school. Some of my family members have it too.
Fortunately, in all of our cases, it’s usually mild. It mostly shows up as bruises, especially on my legs, which can be awkward. I sometimes have doctors ask me if everything is alright at home, and I get self-conscious in summer—I tend to wear pants rather than shorts or skirts.
It was when my husband and I decided to start a family that ITP really became a consideration in my life. Doctors explained to me that it’s common for people with ITP to see their platelet levels drop significantly during pregnancy. ITP can also get worse with subsequent pregnancies. I was the first person with ITP in my immediate family to get pregnant, so I didn’t know what to expect.
My first pregnancy in 2014 was relatively smooth sailing. Every three to four weeks, my ob-gyn would check my platelets. The National Heart, Lung and Blood Institute says that a normal platelet range for adults who don’t have ITP is 150,000 to 450,000 platelets per microliter of blood. My baseline is typically 130,000 to 140,000. During my first pregnancy, my levels didn’t drop below 95,000.
I still planned around the condition. I chose to deliver in a hospital that was a Level I trauma center because I knew that they would be better equipped to handle an emergency. ITP also affected my birth plans.
A big concern with ITP and pregnancy is the potential for increased risks around giving an epidural. As the Mayo Clinic explains, an epidural is a procedure in which an anesthetic is injected into the epidural space, which surrounds the section of the spinal cord in the lower back. There is some evidence that people with ITP may be at higher risk of developing epidural hematoma: internal bleeding in the brain or spine.
To guard against this, in 2019, the American College of Obstetricians and Gynecologists recommended that patients have a platelet count greater than 80,000 platelets per microliter to receive an epidural. Individual anesthesiologists have their own comfort levels too, as I found out. For example, some won’t give the epidural if the platelet count is under 100,000 platelets per microliter.
With my first delivery, my platelet levels stayed relatively stable. I was able to have an epidural as I’d planned, and after 20 minutes of pushing, my healthy, beautiful daughter was born.
Two and a half years later, in 2017, I was pregnant with my second child. My platelet levels dipped lower this time, most notably right before the delivery. The baby was a bit late, so my medical team decided to induce me. My platelet levels started to drop: I was right at that 80,000-platelets-per-microliter mark, after which even the least cautious anesthesiologist probably won’t give an epidural. They managed to put the port in just in time.
As I started to push, my baby’s heart rate dropped. I ended up having an emergency cesarean section, but thanks to the epidural, I was able to stay awake. I saw my baby briefly before she was whisked off to the neonatal intensive care unit. She had some trouble breathing, but thankfully she was released to me safe and well after a few hours.
By my third pregnancy, I felt like an expert—I thought it would be easy because I’d done it twice before. But it wasn’t. My platelets were less stable than they had been in my previous two pregnancies. And at 13 weeks, I had a large subchorionic hemorrhage: bleeding between the placenta and uterine wall. I thought it was a miscarriage and raced to the hospital. They found a heartbeat, but I was warned that there was a high risk that I could lose the baby. They thought it could be related to the ITP, just because of the bleeding, but I never found out exactly what caused it.
Thankfully, the baby kept getting stronger every week, but I had to take it easy. In the 33rd week, I felt contractions. My husband and I went to the hospital immediately—just 20 minutes away—and by the time we got there, I was 7 centimeters dilated. Unfortunately, there were more complications. The baby was in a transverse position—sideways rather than with his head toward the cervix—and I also had polyhydramnios: excess amniotic fluid. I needed a cesarean, but my platelet levels had dropped below 80,000 platelets per microliter, so I couldn’t get an epidural.
My doctors had prepared me to expect that I might have to have another cesarean, and I knew that my ITP might mean I’d need a general anesthetic instead of an epidural. But it was still hard going under, not knowing if my baby would be okay, knowing that I wouldn’t be the first person to see or hold him. Fortunately, when I woke up, he was there with my husband, perfectly healthy.
Throughout each pregnancy, knowing that my ITP could get worse, I tried to just take each day and each blood check as it came. But in the back of my mind, I was getting more concerned with each one. So far all of the kids have had normal platelet levels, but I wasn’t diagnosed with ITP until high school, so we’ll have to wait and see.
My husband and I have decided that three children is the perfect number for us. After each of my pregnancies, my platelet levels went back up to my usual baseline. I still see a hematologist once a year to keep an eye on things, but now that I’m done having babies, hopefully it will go back to my normal. I can handle a few bruises!
Conversation has been edited and condensed for clarity.
Related:
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What to Know If You’re Pregnant With Chronic ITP
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6 Treatment Options for Chronic ITP
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6 Things You Should Know If You Live With Chronic ITP