I hesitate to even know where to begin with this post. To say the last few months have been a whirlwind is an understatement. We were essentially living at the hospital, traveling regularly to and from home (an hour away), staying at the Ronald McDonald House at night, and essentially viewing the world from an upside down perspective. What started as a simple stress test in my 32nd week of pregnancy led us immediately into specialized care the same day. While we got answers we had wanted for so long regarding our former stillbirth, we fell into a rabbit hole of tests and questions that just didn’t add up. Here’s my son Viggo’s birth story and our experience with hemolytic anemia.
At 32 weeks pregnant in mid-November, I went to my local OB for a scheduled stress test. During the appointment, the doctor would intermittently come in to check the readings. The baby’s heart rate was showing consistent “d-cells,” or decelerations. Because of our history, the doctors consulted with one another and decided it would be best for us to go to the birth center next door for an ultrasound, just to be safe.
When we arrived, we waited for radiology. Once the ultrasound tech came in, the impromptu appointment began in a relaxed, friendly way, but it quickly grew quiet. My husband later admitted he had a feeling something was wrong based on how silent the room had become and how focused the tech seemed. Sure enough, the doctor from the OB’s office came in and explained that the tech believed she saw fluid surrounding the baby’s liver. This can sometimes indicate congestive heart failure, and she recommended that we go to see a specialist in Winston-Salem immediately.
June 2025
In June, two months into my pregnancy with Viggo, we were referred to a specialist for additional testing related to antibodies that had been discovered during my previous pregnancy. At that time, lab work showed that I carried “anti-E” antibodies. Essentially, this means that at some point I had been exposed to blood containing the “E” antigen, which caused my body to create antibodies against it. Because of that, if I’m ever exposed again to blood with the E antigen, my immune system will immediately try to attack it.
The first step was to test my husband, to see whether he carries the “E” antigen. If he didn’t, then the baby wouldn’t be at risk. A few days later, his results came back “ee,” meaning he does not carry the antigen. This was surprising, especially considering how high my antibody titer was at the time—1:512. Essentially, that meant the lab had to dilute my blood 512 times before the antibodies were no longer detectable. A titer of 1:16 is already considered risky, so mine was especially concerning. However, given my husband’s results, the specialist felt that the baby wasn’t at risk, and was comfortable having us resume care with our regular OB.
November 2025
After our ultrasound at the birth center, we quickly made arrangements for our daughter and headed to Winston-Salem. The next day, the specialist we had seen in June came in and began another ultrasound to confirm what the previous radiologist thought she saw. At first, he went back and forth, unsure whether there was fluid or not. After taking a closer look, he concluded that he did see fluid and said he wanted to check blood flow in an artery in the baby’s brain. Later, he returned with the results and confirmed that the blood flow was elevated.
With hemolytic anemia in babies, or the affect of “anti-E”, your body compensates for the lack of oxygen by increasing blood flow to deliver oxygen quickly, prioritizing vital organs first. Therefore, the fact that the blood flow is high means that baby is struggling. The only way to see how anemic the baby might be is to test the blood through the umbilical cord. This test is done through a Percutaneous Umbilical Blood Sampling and/or “PUBS”.
After a week filled with discussions, testing, debates among specialists, and constant puzzle-piecing, the doctors decided the best step was to perform a PUBS. There had been extensive conversation about whether delivering him by C-section might be the better option. After all, my body was attacking him, so the decision came down to weighing two paths: the risks of prematurity and anemia in a controlled environment, or leaving him in an uncontrolled one while gaining the benefit of letting him stay inside a little longer.
After the PUBS procedure, his hemoglobin level came back at 5.1—severely anemic. Following the blood transfusion, it rose to 7.5 and stabilized. The goal of the transfusion was to buy him more time and delay a preterm delivery.
Over the next few days, doctors closely monitored the blood flow in his brain. Eventually, they decided it was time to check again to see whether the transfusion was still keeping him stable. If his anemia had worsened, we would move forward with a C-section instead of another transfusion.
Sure enough, his hemoglobin levels had dropped to nearly even lower than they were at the start. The doctor immediately said, “Proceed to C-section—we’re going to meet baby Viggo today.” After birth, the team worked on him for a few minutes before taking him to the NICU.
We spent a little over a month in the NICU with Viggo. During that time, we faced d-stats, oxygen fluctuations, multiple blood transfusions, bilirubin lights, genetic testing, a pneumatosis scare, neurology consults, debates over possible calcifications, testing for toxoplasmosis, and so much more. But, after all of it, we finally brought him home.
By the time I delivered Viggo, my antibody titer had climbed to 1:1260—an unusually high level for anti-E. Bringing him home marked the end of a long, uncertain stretch. As to whether we’ll have more kids, time will tell. The antibodies tend to get more aggressive with each pregnancy that contains the “E” antigen. The bizarre part is that the chances of our kids having it are 50/50. There was only a 12% chance all three of our children would have it! If the next kid didn’t have it, we could theoretically have a normal pregnancy. Our odds, however, haven’t been great so far.
Have you encountered hemolytic anemia in one of your pregnancies? I would love to hear your birth story!
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