My first thought, as a physician, was that it could be surgically corrected. And then as I sat up from the exam table and my doctor wiped the gel off my pregnant belly, I lost it. Hot tears started flowing and my mind began racing—are there any other associated health problems? What did I do to cause this? Will my baby suffer because of his cleft? I felt lost and had so many questions. I called my mother, sister and best friend immediately and then asked my husband if we could stay at his sister’s house. I needed to be surrounded by love and kindness in a time when I felt so much was unknown.
That evening, I scoured the internet—an activity I ask my own patients to refrain from, as it is rife with misinformation. I found great resources, but also found sites that were decidedly not medically accurate. More than any scientific information, I craved other parents’ words of wisdom and read hundreds of blog posts. I even wrote to women overseas. One day, I waited for hours for a woman in London to write back to share her words of reassurance. I needed human connection and support.
In the weeks following the prenatal diagnosis, I saw numerous specialists and genetic counselors to perform testing to look for markers for other syndromes. As a patient who is also a doctor, I enjoyed the privilege of being able to navigate and understand the medical system, multiple referrals, and medical jargon with relative ease. But I also concealed my profession from some of my healthcare providers to ensure that they would speak with me as a mother-to-be and not as a medical professional. Usually, for diagnoses I was not familiar with, I would conduct my own medical literature research, but this time, I could not bring myself to do so. The anxiety and fears I felt were those of a mother-to-be; facts alone could not provide the answers I needed. Then, four major things happened that whittled away at my anxiety.
The first thing that happened was the pediatric nurse assigned to my family shared with me that there was another local couple who would be willing to speak with me about having a child with a cleft lip and palate. As I spoke with the other mother on the phone, we realized we were next door neighbors and literally walked out of our doors with our phones to our ears and waved to each other. I no longer had to wait to hear from women across the world! She and her son welcomed me into their home and shared baby albums, ultrasound pictures, and many stories that put my heart at ease.
The next thing that happened was I went for a consultation from a high-risk obstetrician/gynecologist. She was highly knowledgeable and extremely thorough in her discussion and observations regarding various syndromes associated with clefts. But she said one sentence that struck me in a way that I could have never imagined—after finishing her ultrasound and assessment, she looked me in the eye and said, “I’m not God, but this kid is cute,” which as an expectant mother, I heard as “I am not perfect but everything will be okay.”
The third thing was that I made the decision to quit my full-time job, which up to this point had been my life’s work, to make myself available for my son and any medical or surgical needs he might have. I was not sure what resources in the community I would have to care for my baby with special needs, and I did not want to struggle with balancing work and caring for my son. I was fortunate our family would be able to afford the change financially.
The ultimate event that made all my fears disappear was the birth of my son. I remember holding my baby right after he was born and thinking how perfect he was, just the way he came into the world. I couldn’t believe that it was only months ago that I felt like protecting my baby in a little bubble, off on our own island. Now I was beaming with pride and wanted to share my baby’s beautiful smile with the world. Our community began to expand during my pregnancy, but soon after our son’s birth, grew far beyond our family and friends. We met lactation specialists who taught me how to pump breast milk effectively and then feed my son with special bottles. We met a surgeon who asked us to call him “uncle” as he would be part of our “family” now. We met pediatricians, ENT specialists, speech pathologists, pediatric orthodontists, nurses and other families who had children with clefts similar to our son’s—all people in our community who wished to see our family thrive.
Pregnancy and motherhood, in addition to the pure joy and happiness it can bring for some, can also be filled with insecurities, questions of “Am I doing the right thing?” combined with the sense of a loss of control, and moments of weakness. We need to be able to depend on our communities for support, and much of it starts right after the ultrasound gel is wiped off our abdomen, no matter what the circumstances are—the diagnosis of an unplanned pregnancy, the diagnosis of one of multiple possible birth defects, or the diagnosis of pregnancy loss. Mothers are pillars of strength supported by the communities that they surround themselves with. That’s also why I’m supporting Mamas Day this year, which is a movement to celebrate and thank mothers with more than cards and flowers, to improve the day-to-day conditions facing mothers and families, and start seeing families as they are to help mothers and their families thrive.
Today my son is a healthy 15 month-old, who is babbling and toddling around. I have returned to work with even more drive and passion after recognizing that I can rely on others to support me and my family’s needs. Now, every day when I care for women, I make an extra effort to connect and support them in the specific ways they need during moments that may be filled with insecurities. It is an honor and privilege to be part of that experience and to reciprocate the support that so many have shown me, not only as a physician, but as a member of my community. Every day, when my son smiles his special, beautiful smile while waving goodbye when I leave for work, I remember this.
Tania Basu, MD, MPH, is a board-certified obstetrician/gynecologist and a Fellow at the Physicians for Reproductive Health Leadership Training Academy. She and her family live in the Los Angeles area.
Beautifully said. xoxo
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