Science is Slow & People are Hurting Now

What Can I Do?

I knew about birth defects before our daughter, Abigail Reileen, was diagnosed with them during my pregnancy. At least, I knew about them academically. In fact, the same week we had our anatomy scan that revealed early hints of a developmental problem–just days before that fateful scan–I was in Neuro205 looking at a picture of her specific birth defect in my textbook. I didn’t know then that I was looking at her specific birth defect, but when the doctors started throwing the word anencephaly around, I suddenly realized I knew what that meant.

One of the first things I did, because I had already been in the middle of choosing a lab to practice research as a student, was search the “Neuroscience Research” web page for ‘neural tube defects,’ a family of birth defects that includes anencephaly. I found Dr. Michael Stark’s laboratory, a lab that used a chick embryo model to study the pathogenesis and rescue of neural tube defects in chickens.

Previous graduate students had done extensive experimentation on this model. In so doing, they had discovered that a commonly elevated compound in the blood plasma of mothers with Type 2 Diabetes and Obesity was actually teratogenic–meaning, it could cause birth defects.

This felt like one plausible explanation for why neural tube defects were still happening in developed nations that already had folic acid supplementation in popular food products like pastas and cereals (the current best practice for preventing neural tube defects in large populations).

Excited, I jumped at the opportunity to join this lab as soon as I recovered from the miraculous birth of our daughter. Combining the previous findings of the lab with a hunch I developed while doing market research as an intern for a nonprofit called Live Love Well in Kenya, I began to form my own hypothesis about a natural, leaf-derived compound that might help prevent neural tube defects more broadly. This could be good. This could work.

Three years into that work, and with my wonderful son still saying to me, “Mom, after you cure birth defects…”, I’m realizing that science takes pretty much forever. Science is slow! And that’s okay. Sometimes, the way conflicting studies come out and get interpreted for us by our media experts, it can feel like whiplash with all the “science” coming at us. The truth, though, is that good science needs replication and careful analysis. Like business, it requires flexibility and a good pivot when the direction isn’t yielding the hoped-for results. Science isn’t supposed to hope for results at all, but when you’re dealing with the prospect of human health, you really do hope.

I’m not ready to give up on science. Not by a long-shot. I continue to work in Dr. Stark’s lab, and will do so right up until my graduation in April 2024 (less than three months away!!!). But the problem with science taking so long is that the right solutions to preventing neural tube defects are still a long way off. Even farther off is the day when the exciting, shiny studies that prove something works to prevent all neural tube defects, or all fatal birth defects, actually trickle down to the physicians and genetic counselors that work with expecting and planning parents.

And people are hurting right now. Right now someone is finding out their baby–that little bean that is still kicking around in their belly–isn’t going to be equipped with intact physiology at birth. Because of a life-limiting birth defect, they won’t be empowered to survive outside the womb at all.

If I could have my dream, nobody would ever have to experience that moment. But for the moment, this dream isn’t realistic. I have had to ask myself, what can I do right now to help with this intolerable suffering? How can I comfort others like me and Bill who are struggling against the curtain of darkness that falls the moment you know you have lost your child?

For me and for Bill, the answer was to create something to let other parents know they aren’t alone. With my decades of writing experience and Bill’s background in computer science, a website seemed like a great way to start. InfiniteImprints.org was born.

When Abigail passed away, the moment I had dreaded for what seemed like so long–though it had only been a few months–finally caught up with me. Her tiny heartbeat just kept slowing down. Breathing had become too difficult for her. Even I had to admit that she wasn’t going home with us from the hospital. Nothing could console me. I sobbed for an entire day before I was discharged from the hospital without her. That night, still in the hospital, I walked around the labor and delivery room that held so many potent memories from such a short time. And I wrote. On my tiny little phone, I wrote. Her entire eulogy came out of me in an hour.

Later, I would paint her. Sing for her, and even try to write a song, though that didn’t turn out so well. I can never forget how these creative endeavors helped me show Abigail to other people so they could grieve her, too. And that mattered.

What can I do? I can’t make science work faster. I can’t actually cure birth defects single-handedly. What I can do is teach others what I have learned about honoring our beautiful babies through writing, art, and music. What I can do is recruit others who have even greater skills to help teach families surviving infant and child loss what they know. What I can do, because I’ve done it before, is collaborate with other community members to build something beautiful and honest that’s designed to fill a need that I see.

I really hope you’ll join me. Contact me, and let’s talk.