I got a phone call about my daughter this week.
It came out of the blue. Hardly anyone talks about her to me anymore, and all the medical tests and analysis of her short life are long finished — or so I thought.
The call was from Natera, the company that runs the Panorama screening test that checks for common chromosomal abnormalities in the first trimester by isolating cell-free placental DNA from a vial of the mother’s blood (also known as NIPT or NIPS). We used the test as our primary first-trimester screening in both my pregnancies. When they called this week, they wanted some more information about the posthumous testing that was performed on my daughter. When the autopsy was performed, there was so much autolysis that they were unable to definitively identify her sex based on anatomy alone, so the hospital contacted Natera to confirm the sex they had identified chromosomally. Apparently the hospital also told Natera that we had decided to opt for a microarray analaysis of our daughter’s tissue to determine whether less common chromosomal abnormalities contributed to her death, but they never followed up with Natera to let them know the results.
So, two and a half years after our daughter’s death, Natera called to follow up, and to make sure that the microarray results agreed with their prenatal screening results (they did). Apparently this confirmation provides valuable verification data for the company.
The woman I communicated with was lovely, and very sensitive. She expressed sorrow for our loss, and apologized if the inquiry was in any way upsetting. I didn’t find it upsetting at all, in fact — I like thinking that the data generated by my daughter’s short life might in some small way be helpful for improving the science of non-invasive fetal testing. It’s one way in which her life has meaning to people beyond our immediate family. And I am always interested to learn more about scientific fields other than my own; this gave me some insight into the scientific (and commercial) practice of genetic testing. Even the corporate flavor of the interaction doesn’t bother me too much, since I believe that the development of non-invasive testing is already providing a great benefit to pregnant women as well as their unborn children (since the false-positive rate and the risk to the fetus are significantly lower than many other screening methods), and I’m basically OK with the fact that someone is making money from providing this service.
I did feel a sense of wistfulness about this conversation. It’s probably the last time I’ll ever get a phone call about my daughter. It also made me remember some of the other phone calls I have gotten about my daughter. Some were very upsetting, like the phone call from my primary care doctor’s office the Monday after I delivered our dead baby in the hospital, congratulating me on my pregnancy (some seriously poor communication happened somewhere… I have since switched doctors, for this and other reasons). Or the phone call from the campus daycare several months after her death, informing us that a spot had opened up for our daughter. Those were very difficult calls to receive. But some calls about our daughter were thoughtful and loving. There were calls from friends and family — and not just immediately after her death (when I wasn’t always up for a whole lot of talking anyway), but weeks and months later. These days, it’s hard to imagine that a call about my daughter would be upsetting. Those wounds have been healing for a while now, and while I still miss her terribly and often wonder who she would be today if she had survived, her memory is not painful to me. My pregnancy with my daughter was a time of extreme joy, hope, and love. Her death was the most difficult experience of my life. But my memories of her now are mostly of the experience of being pregnant with her and our hopes for our lives together with her. I love remembering my daughter, even when it also means remembering the pain of her death.
She lives on in our family. Our son will grow up knowing that he had a sister. When he was born, one of the most precious items I packed in my hospital bag was the hand-knitted had that the hospital dressed her in when she was born — the only clothing she ever wore. Because her life was so short, the few reminders that I have — ultrasound photos, the hat, pictures of her after she was born, her hand and footprints, some certificates from the hospital — are all the more precious. Even though I was surprised by the call this week, it was nice to talk about her for a little while, and to have an opportunity to remember her presence in our lives.