This is Part II of a two-part series on molar/partial molar pregnancy. Part I explained what molar/partial molar pregnancy is and the risks it presents. Part II describes one woman’s personal journey upon discovering that she had experienced a partial molar pregnancy.
The woman who is the subject of this story experienced a partial molar pregnancy before much information was available to distinguish its risks from those of molar pregnancy. It was the mid-1990s and doctors applied medical findings about molar pregnancy to patients experiencing partial molar pregnancies; thus instead of being informed that she had a 5% risk of developing trophoblastic cancer as a patient might be told today, she was advised of a risk four times that great. By that time, the odds had ceased to matter, however, as you will see from reading about her experience.
With a partial molar pregnancy, an embryo may or may not develop. In this woman’s case, it did. Because of sonogram technician competency issues, she never knew whether the embryo had a heartbeat. She had strong instincts throughout the pregnancy that her body was destroying her baby- she may never understand why, but her instincts did not detect that the baby was either nonviable or deformed.
Miscarriage
At about 9 weeks of pregnancy, this woman experienced some minor spotting. Having had a prior miscarriage and having doubts about the validity of the sonogram she had recently undergone (which officially indicated the presence of a heartbeat), she asked for a second sonogram. The baby was visible on the songram screen but the telltale throbbing of the heartbeat was not present.
The absence of a heartbeat was crushing. A second miscarriage. Others in the sonogram room said that the fetus did not look normal, but to her it did look to be normal other than the absence of a heartbeat. At this point, no one suspected partial molar pregnancy.
Grief overcame her. Competing with that grief was an overpowering need to have the products of conception removed from her body. She felt like she was being poisoned by those foreign materials inside her, a feeling that medical personnel did not understand. Their lack of understanding- of even a reasonable effort to accept the validity of her instincts- left her feeling isolated and vulnerable.
Although she had chosen to let her prior miscarriage spontaneously abort once she learned of it, this time she felt very differently. Her need to get the foreign material out of her body had a life and death urgency to it. So even though there was time in which she could have safely let the pregnancy miscarry naturally judging by the known indications (usually an option until about 10 weeks), she opted for a dilation and curettage (D & C). When the D & C was scheduled for the next morning, the wait concerned her; the need to rid herself of the foreign material in her body felt that urgent.
The doctor performing the D & C used the word “promise” in telling this woman that the pathology report would be inconclusive. She remembers her reaction to that ill-advised word. No professional should ever utter it in offering professional advice, she remembers thinking. But this doctor did.
Devastating Diagnosis
A few days later, the same doctor who performed the D & C called with the results of the pathology testing. She had experienced a partial molar pregnancy. The baby had 3 sets of chromosomes. The doctor informed her that she had a 20% chance of getting cancer in the following year and advised her not to get pregnant for one year- or one year past the conclusion of cancer treatment if trophoblastic cancer should be diagnosed. He detailed the medical tests she would need to check for cancer. He refused to answer “what if,” questions. Although she found this insulting and believed that he was acting contrary to her best interest, she was too emotionally compromised by the triple shock- baby loss, cancer risk, no pregnancy in the near future- to address the issue.
Immediately after the diagnosis, she scheduled a chest x-ray to ensure that no cancer was in her lungs. Each week she had a beta test (pregnancy blood test) to see if her HcGH levels were stable. A rising level would be presumed to mean trophoblastic cancer was present and, without further testing, chemotherapy would be prescribed. This presumption infuriated her. The doctor acknowledged that there were other rare but possible causes of an increased HcGH level besides pregnancy and trophoblastic cancer. How could any medical professional expect a person to choose to undergo chemotherapy on the basis of a presumption? The doctor insisted that the protocol was to make that presumption and act on it. She didn’t doubt his accuracy in reporting the protocol; her fury stemmed from the irrationality of it. Throughout this entire experience, she wanted medical science and what she got was medical “art.”
With each test, there was a wait for results. She found herself irritable and anxious each week on the day before the results were expected.
In the hopes that it might offer some protection, she exercised and ate healthy foods, although the doctor said that what was going to happen was already medically preordained. She felt healthier than ever before but worried all the same.
Choosing Pregnancy
After 3 months of “clean” test results, it was time to make the hardest decision of her life. At 39 years old, this woman wanted a second child. Actually, she hoped to have a large family. Time was slipping by.
From the scant information she could get her hands on about partial molar pregnancy, she began to question some of the medical protocols. At the time, experts were simply extrapolating molar pregnancy facts and procedures to treat partial molar pregnancy patients. This didn’t seem right, and some pregnancy books implied that partial molar pregnancy was extremely common but usually ended without diagnosis in the early weeks of pregnancy. Those people did not get any testing or treatment, and she surmised that many of them opted to become pregnant in less than a year without dire results.
What if she took the risk and got pregnant? She discussed the risk with her husband and tentatively decided in favor of trying for pregnancy. Before doing so, she called the doctor and informed him of her tentative decision. She asked him to assess the risk and to disclose everything she might be faced with in the event trophoblastic cancer developed during the pregnancy.
To her surprise, the doctor was straightforward and encouraging. He told her that the risk was probably minimal and it was probably okay to go ahead and try to get pregnant. If she did develop trophoblastic cancer, she would be in uncharted territory, but the baby would likely survive cancer treatment unharmed. He said that there was no data on first trimester chemotherapy use in pregnant women with trophoblastic cancer; the data relied upon was from third trimester pregnancy patients undergoing a different, stronger type of chemotherapy treatment for breast cancer. Those babies fared well.
What was still frightening was the possibility of another partial molar pregnancy, one with a viable fetus. She did not ever want to have to make a choice between terminating her pregnancy and facing death by hemmorhage. In her earlier years, she might have seen continuing a pregnancy in such circumstances as a trial to be overcome, one in which sheer willpower might obtain a positive outcome despite the odds. She might have seen a choice to continue such a pregnancy as risking self-sacrifice for the good of the baby.
By now, she was well beyond that simplistic reasoning. The reality was that the baby would have such a negligible chance of surviving as to have realistically no chance at all. With a viable fetus in a partial molar pregancy that didn’t spontaneously abort, termination would be the only means to save the only one who could survive in the long run- her. And she had her toddler to think about, a child she could not bear to let grow up without a mommy.
Choosing to become pregnant at this time involved real, calculated risk- not philosophical debate. She had already learned that the odds meant nothing; she’d been told prior to the diagnosis that there was only a 1 in 1500 chance that her pregnancy had been molar/ partial molar; yet there she was, the 1, not one of the 1499. At that realization, the odds ceased to have meaning.
In those early days of general internet availability, she was able to uncover but one case history of a woman who attempted to carry a viable fetus accompanying a partial molar pregnancy to term. That woman named Katherine held religious beliefs that precluded termination even in her dire circumstances. She was determined to deliver the baby. Unfortunately, although Katherine and her baby managed to make it to the second trimester, they both succumbed before the baby could have been successfully delivered. Katherine died from massive hemorrhaging.
Reading about Katherine prompted this woman to explore the details of death by hemorrhage. She recognized that it would be a horrible way to die.
Emotional Fallout
One of the hardest things about having a miscarriage due to such an unusual occurrence as a partial molar pregnancy is the unthinking reactions others express. Initially, friends this woman confided in had no idea partial molar pregnancy existed. They suggested that she find another doctor, that the diagnosis sounded bizarre. To experience something so traumatic while well-meaning friends doubted its existence and questioned her belief in it added stress to an already troubling situation.
Because her partial molar pregnancy caused the second miscarriage in sequence, she was especially sensitive about her reproductive capabilities. That internal agony was exacerbated by unspoken and spoken signals from others; suggestions that she adopt or be grateful for the one child she had, while well meaning, reinforced her worries about her ability to have another successful pregnancy.
When she finally did become pregnant again and confided in a few friends, she detected subtle reactions- a slight drawing of breath, a less than enthusiastic congratulations followed by a quick change of subject- that infected her with their doubts. It hurt her that her friends wouldn’t share in her cautious excitement at being pregnant, didn’t believe in her pregnancy’s viability. She wondered if they judged her foolish for taking the risks associated with becoming pregnant. Yet how could they know her personal agony? Or fairly evaluate her innate sense that all would turn out okay? Though her friends’ reactions saddened her, she said nothing.
Only after the 18 week sonogram, when all appeared well, did a full measure of confidence resurface. The pregnancy resulted in the birth of a full term baby. By the time of the baby’s birth, it was already more than a year since she’d had the partial molar pregnancy. She was free from the worry of trophoblastic cancer.
