My sister-in-law, and editor, said I can absolutely NOT publish this essay until there is an ending. It would be too tough on you readers to not know. And so, that is exactly why I DO need to publish this. If my blog is about living in my shoes as an ob/gyn, then that includes living in this unknown at times as heart wrenching as that may be. So readers, please let me know what you think. I may not have an ending to the story for another 6 weeks. I can update you then.
Sadness engulfed me as a looked at the twins on the ultrasound I was performing. With mom lying down, it looked like the babies were on top of each other, one being tackled by the other as if playing football. The bottom one was folded like a Buddha with its butt down in mom’s pelvis, the other stretched out on top, relaxing in its bath of amniotic fluid. They both were wiggling in their tight space they were sharing, a space usually reserved for one. On an unknown day, perhaps soon, perhaps still weeks away, there would just be one wiggling, the other would not survive, but would pass away next to its brother, unfortunately, not meant for this world.
Months before that ultrasound, a young Indian couple sat in my office. They both stood as I entered and introduced myself. Dressed in jeans and a sweater, my new patient approached me with a warm smile and light touch of her hand. Her husband stood stiffly and nodded his head in greeting. I noticed a mark or Tilaka on his forehead. “Perhaps a religious man” passed through my mind. As soon as I sat down, she said “we would like to start a family. We have been married for a year and have not been able to become pregnant, “ she continued. “We hope you can help us.”
I see so many Indian patients, I could guess why they were having difficulty conceiving – she was probably not ovulating. It is common in this population, but I still had to sort through their personal history to know this for sure.
As we continued to discuss her health history, her husband interjected once in awhile, making sure I understood his wife’s answers. Occasionally, she looked to him and, without words between them, he instinctively knew to translate my question into HIndi. Their interactions were seamless as if they were the male and female of one being. I learned that he was an engineer and she was not working since coming to America. They had no family here and they were excited about starting their own.
In time I diagnosed their infertility issue and so began the journey together to manipulate nature to help them conceive. It involved medications, ultrasounds, lab tests, timing ovulation and eventually, intrauterine insemination. Unfortunately, in the beginning, they misunderstood some of my instructions and their timing was off. Despite the rough start, they were pregnant fairly quickly, in only 4 months.
At their first prenatal appointment, they were all smiles. On the ultrasound, I quickly found the fetus with a good heartbeat. But wait… as I adjusted the probe, I saw a second sac. I could hear my medical assistant behind me softly say “twins.” The ultrasound was a little tricky, the second baby was almost behind the first and I struggled to get good measurements. They seemed a little different in size, one a little larger than the other. But since it was a matter of a couple millimeters difference, I assumed it was the angle I was looking.
When I told the couple they were having twins, they responded with a causal “oh” in unison. It was as if I was telling them something as inconsequential as the weather, their composure unwavered at the added news. “Well, now we have a little more to talk about,” I said smiling back at them.
As before, with the infertility treatments, there always seemed to be a challenge of communication. The first trimester is already a challenging time for an OB in terms of needing to discuss a lot of pregnancy topics in a short time. One of the most difficult topics being the idea of genetic testing on the baby, or in this case babies. There are different tests that offer slightly different information and it can be tough for a patient to decide what they want to do. With this couple, adding the language issue, the difficulties of conceiving and having twins, made presenting the options to them even more complex.
“What would you do?” they asked me. “I can’t make that decision for you,” I explained. “You need to decide for yourselves if you want to screen the babies for chromosome abnormalities, the most common being Down’s syndrome. It is more difficult with two babies because one might be normal and one might not. Then you will have to decide what you would do.“ I have explained this to so many patients, it rolled off my tongue with no emotion. It is so infrequent to see an abnormality. By the time they made a decision, they were already well into the second trimester. They opted out of doing any testing.
By their next appointment, the babies were 20 weeks, far enough along to have the anatomy ultrasound.On the day of their ultrasound, the tech took me aside. “I need to talk to you about their ultrasound. One of the babies doesn’t look right. It is smaller and has some other strange findings.” In reviewing the pictures with the tech, I grew concerned. Again I was challenged with discussing complex medical issues in a way they could understand. I ended with “you need to get a more detailed ultrasound at the hospital. Call there to make an appointment as soon as you leave here.”
Apparently, the immediacy of contacting the hospital was not clear to them. They ended up scheduling an appointment 4 weeks out and then didn’t show because my patient didn’t feel well that day. I called them to make sure they rescheduled the ultrasound and, in the end, it was done 7 weeks after the initial anatomy ultrasound. Unfortunately, by then, Twin B had some dramatic changes. It was severely growth restricted – literally, half the size of A – and had several anatomic abnormalities consistent with a probable chromosome abnormality.
I sat down with the patient and her husband to review everything. The hospital specialist recommended they have a amniocentesis to determine the chromosomes of both. Several interactions later with me, the high risk specialist, a genetic counselor and a multidisciplinary meeting of various other specialists, they were presented with the unimaginable truth. Twin A had normal chromosomes and was thriving. Twin B, however, had Down’s syndrome and was severely compromised with multiple anatomic issues as well as growth restriction and poor blood supply from the placenta. As best as the experts could predict, they expected twin B would not survive the pregnancy. The babies were now 30 weeks along.
Once again, we sat and talked. My heart was heavy with the options before them. My patient didn’t speak much, but seemed quite calm in the face of losing one of her babies. Her husband appeared to have a good understanding of the situation. “We were only expecting one baby from the beginning,” he responded when I asked how they were coping with the news. The options they were currently weighing was first to decide whether to intervene – meaning delivering early – if there was distress with Twin B. If so, then Twin A would suffer from possible complications of prematurity while Twin B may not survive at all. If they would not intervene for B, then no further testing would be done on B and delivery would only be based on A. They also had the option to selectively terminate B to theoretically optimize chances for Twin A to do well. Since this is such a rare situation, no one could really predict if this would help. In addition, selective reduction is such a specialized procedure this late in pregnancy, that they would have to go to Maryland to have this done.
As we discussed all this, I looked back and forth at the two hoping to see some sort of reaction, some way to gauge how to support them and guide them. I didn’t see resignation or anger or sadness. I just saw acceptance. “We want to do what is best for Twin A. We want to come home with one healthy baby.”
My patient could feel both babies move and it saddened me that one day she wouldn’t, one day she would feel one and then she would know.
They are currently still pregnant, waiting for one to die and let the other live to grow bigger and stronger in its mother. Every week I see them, I can’t imagine what it is like to walk in their shoes. Every week I see them, I need to take a moment outside their room to steady myself. Will this be the day I have to tell them their baby died?
I honor Twin B’s short life and the mother who gave of herself to give him a warm home.