My Rh Sensitized Pregnancy Was A Total Nightmare

by Holly Scudero
Scary Mommy and Holly Hildreth/Getty

My final pregnancy was a stressful affair. It wasn’t just because I had to introduce my oldest, a single child for so long, to the idea of being a big brother. And it wasn’t because this was actually my fourth pregnancy, a hard-won victory after two losses.

This pregnancy was stressful because it was extremely high-risk. And even though I knew that going in, none of my research could have prepared me for exactly what to expect during my specific situation.

I am Rh-sensitized. I like to flippantly tell people that my blood is messed up, broken, but it’s more complicated than that. I have Rh(-) blood, while my children’s father has Rh(+) blood. This results in a condition the pregnancy books call “Rh incompatibility,” where the baby very likely has Rh(+) blood as well. Unfortunately, the books did very little to prepare me for what exactly this meant.

My first pregnancy was easy-peasy and low-risk, a simple labor leading up to an intervention-free homebirth. After that birth, I did exactly what my midwife had recommended: I went to the hospital to get a shot of Rh immunoglobulin, more commonly known by the trade name RhoGAM. This medicine is designed to prevent isoimmunization–Rh sensitization–in circumstances like mine.

But for me, it didn’t work; no medication works 100% of the time, after all. Or perhaps I became sensitized somewhere in the midst of the nightmare that was my first miscarriage; I’ll never know for certain. All I know is that I did become sensitized somehow, and now I’ll be sensitized forever. Rh sensitization can’t be cured.

The Rh factor is determined by whether or not a specific protein is present on red blood cells: if your blood has the Rhesus protein, your blood type is Rh(+); if you lack it, you’re Rh(-). And when you’re Rh(-), your body views the presence of that protein as an infection; if Rh(+) blood gets mixed into Rh(-) blood, the immune system actively seeks and destroys the invading blood cells, creating antibodies against them for the future.

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This comes into play with blood transfusions, but it also creates an issue in pregnancy. When a person becomes Rh sensitized, it means their body has detectable levels of antibodies against the Rh protein. If that person becomes pregnant with a baby that has Rh(+) blood, eventually the immune system will recognize it and go on the attack.

RhoGAM is a miraculous invention of modern medicine that can prevent sensitization because it’s essentially purified antibodies that destroy the “invaders” before the immune system can create its own antibodies. The RhoGAM eventually leaves the parent’s bloodstream, leaving behind no memory of the unwanted Rh(+) blood. The medicine is given after certain invasive tests during pregnancy, after miscarriages and abortions, after childbirth, and after any kind of bleeding or trauma that may have led to blood mixing.

Many people are suspicious of RhoGAM, especially within the natural birth community. They’re worried about the medicine’s ingredients, or fearful that the risk of sensitization is over exaggerated. But the truth is that the regular use of RhoGAM has saved countless women from experiencing future traumatic pregnancies, and countless babies from suffering through the lingering effects of Rh disease.

My fourth pregnancy–my final pregnancy–was full of heartache due to being Rh sensitized.

The first half was marked by blood tests. In a low-risk situation, blood work is routinely done early in the first trimester and again roughly halfway through pregnancy. Things were different for me. I had my first blood test at 8 weeks to get a baseline for antibody levels, and then I continued having blood drawn at every single appointment. As a teenager, I had a phobia of needles, but any lingering fear was quickly done away with in the face of regular blood draws.

Things remained low-key for me and Baby until about halfway through the pregnancy, when suddenly my antibody levels spiked dramatically. This meant that my body had suddenly recognized the presence of my baby–and their Rh(+) blood. More antibodies meant my immune system was actively attacking my baby’s blood supply.

Now we had to take a more proactive approach to monitoring my pregnancy. This meant lots of ultrasounds. In a low-risk pregnancy, there is usually a 20-week ultrasound to check for fetal abnormalities. Sometimes there’s an ultrasound at 8 or 12 weeks to verify fetal viability, and there might be other ultrasounds periodically for medical (or non-medical) reasons.

In my case, ultrasounds became weekly. Half were at my normal hospital, where I hoped to ultimately give birth, and the others were at a hospital farther away, where I was seeing a specialist who had extensive experience with Rh sensitization. By alternating between the two, we ensured that a lot of experts had their eyes on my case, which was reassuring to me.

But it also made for lots of lonely time spent traveling: sometimes taking the metro and buses to my local hospital, other times driving an hour north to see the specialist. During these long treks–sometimes alone, other times with my son in tow due to a lack of childcare–my thoughts would spiral around and around. Happiness for my growing family was always tempered by the ever-present fears of the unknown and unpredictable aspects of this pregnancy.

These ultrasounds were watching for four “soft” markers for fetal anemia, which is the primary risk for the baby in an Rh sensitized pregnancy. These markers were how fast the blood was flowing in a certain artery in Baby’s brain; excess fluid (edema) in multiple areas of the body; swelling of the liver or spleen; and overall amniotic fluid levels.

I made it to 28 weeks before my baby started showing signs of anemia, and then the real excitement began. My doctor scheduled me for cordocentesis, which is where a sample of Baby’s blood is taken from the umbilical cord. Because of the possibility of this starting premature labor, I was required to receive two doses of corticosteroids beforehand, which would help speed up Baby’s lung development–just in case.

Cordocentesis is just as uncomfortable as it sounds. Drapes were placed, my tummy was sterilized and numbed, and ultrasound was used to guide a long needle through my abdomen and into Baby’s umbilical cord. The doctors were able to get a reading for Baby’s red blood cell count immediately. Baby was not anemic yet, so after a half hour on the fetal monitors I was allowed to go home.

However, the following week’s ultrasound showed more worrisome signs. I was booked for another cordocentesis, to be followed by an intrauterine blood transfusion.

That procedure was a whole new world. I checked into the hospital early and underwent my usual in-depth ultrasound. And then… I waited. For hours. On continuous electronic fetal monitoring, IV in place, dressed in a hospital gown, unable to eat or drink due to the small but present possibility of the procedure causing problems and necessitating an immediate cesarean birth. They shaved my belly just in case, and even wanted to place a catheter (I refused).

I had brought with me several copies of a birth plan for an unplanned cesarean, again just in case. While the overall risk was small, it was important that I think ahead of time about what I wanted for myself and for my baby if that came to pass. While all of my nurses were very kind and supportive, it did little to soothe my fears about the impending procedure.

Eventually, I was brought to an operating room. The temperature was cold and icy; I was not allowed to wear socks. After cordocentesis, the doctor was able to pinpoint exactly how much blood Baby needed, which was then transfused. The entire procedure was awful, not especially painful but extremely uncomfortable; the area was numb, but the tugging and tension I felt meant I couldn’t even escape into my own mind. I ugly-cried the whole time, clutching the stuffed animal my older son had sent with me for comfort while desperately trying to keep the lower half of my body completely still.

The procedure was successful, and after another hour of monitoring, to ensure that Baby’s body was accepting the added blood, I was finally allowed to eat. After a few more hours they let me go home, with strict instructions for taking it easy and monitoring for signs of early labor.

And a few weeks later, I did it all again. All in all, I had cordocentesis five times, and three of those were immediately followed by blood transfusions. For one of those, Baby was so wiggly that he required anesthesia prior to the procedure. After, I had to remain on the fetal monitors until I could physically feel Baby moving again.

For another, my Braxton Hicks contractions were so strong that I needed magnesium sulfate before they could proceed. Even though the magnesium barely affected me–the contractions barely slowed and my head didn’t feel even remotely fuzzy, one of the most common side effects–we ultimately proceeded with the transfusion. However, the contractions considered during and after the transfusion, and my doctor feared I had started labor. It was only after two unwanted (and unnecessary, in my opinion) vaginal exams that I was allowed to go home, and even then I was forced to sign a paper saying it was “against medical advice.”

At about 36 weeks, Baby was looking anemic again, but we had reached a stage where it was safer to induce labor rather than attempt another transfusion. I asked my perinatologist to strip my membranes, and that triggered labor shortly before the planned medical induction. It certainly wasn’t the dreamy homebirth I’d had with my oldest, but my labor with my youngest was smooth and free of bumps, and I delivered him vaginally with minimal interventions.

But we weren’t out of the woods yet. While my newborn, another son, did not require an immediate transfusion, he developed severe jaundice and required intensive phototherapy and monitoring; my antibodies were still in his bloodstream, destroying his red blood cells. He spent 11 days in the NICU. I was a mess, trying desperately to divide my time between my 5-year-old at home and my sick newborn, wrought with postpartum hormones, and all the while pumping breastmilk every 3 hours, day and night.

After my baby came home, we had weekly follow up appointments for blood work. Those doctor visits were torture for both of us. Even though I was able to hold him through the blood draws, I cried with him as he protested his treatment. It took an additional month and a half before he was declared fully recovered from Rh disease.

Rh sensitization is a problem that gets worse with time. If I were to get pregnant again, the complications would start sooner and be more severe. While my youngest escaped with no long-term issues, unchecked Rh disease can cause fetal death. It’s important that sensitization be detected early so that the pregnancy can be properly monitored. Better yet, it’s vital that sensitization be prevented with the use of medicine whenever possible.

The memories of this entire pregnancy are still deeply traumatic to me, more than three years later: the testing, the transfusions, the constant low-level stress, the lonely hours of driving to appointments, the spike of adrenaline with every phone call from my doctor, the sleepless nights as I wondered if I had made the right decision in putting my body and my baby through this. I had done research on Rh sensitization prior to getting pregnant, and even talked to a specialist, but I never could have truly prepared myself for just how hard this pregnancy would be.

The trauma is still so intense that when, a year and a half later, I briefly thought I was pregnant again, I looked into how to terminate. I could not imagine putting myself and my kids through another high-risk pregnancy. It turned out to be a false alarm, but shortly after I opted for sterilization rather than risk ever getting pregnant again.

The numbers behind this pregnancy are unnerving too: 3 transfusions, 5 cordocentesis procedures, 18 ultrasounds, 25+ hours of fetal monitoring (not including the amount while in labor itself), 26 maternal blood draws, so much money spent on gas and public transportation and parking fees. I don’t want to know what my medical bills would’ve looked like had I not had good health insurance.

Rh incompatibility is not an issue to be taken lightly, and Rh sensitization is a serious condition which adds layer upon layer of complication to pregnancy. The consequences of sensitization are not discussed thoroughly in any book I’ve ever read. It may not be very common nowadays thanks to the successful use of medication, but it’s still an issue to be aware of, especially for those with Rh(-) blood.