It was a dark and stormy night…
No, just kidding. It was a sweltering midsummer afternoon when my mother’s contractions began. My father’s cousins had come over to swim in the pool that day and through the window my mother could hear them laughing and splashing as she lay on the bed. She would have been out there with them, cooling off from the heat, but she hadn’t felt so good and needed to lie down. When my father came home from work a couple of hours later, he would take her to the hospital where I would make my debut.
My birth was a greatly anticipated event. Not only was I the first child for my parents, but I was the first grandchild and first great-grandchild for all parties involved. Everyone was waiting with bated breath. Because my mother was young and healthy and there were no known health issues in our family, she had not had any ultrasounds or prenatal testing that would have indicated anything was amiss. They didn’t even know if I’d be a boy or a girl.
Labor and delivery went as expected and I came into the world at 11:44 pm that summer night. It was immediately obvious that all was not “right” with baby me. They allowed my mother to hold me for a few minutes before taking me away. While a cleft lip and palate was not an unheard of birth defect, my “clawed” hands and feet, sparse hair and eyelashes were cause for concern. The doctors wanted to examine me further to determine if I had missing or deformed internal organs or mental deficiency.
My mother was taken up to her room without me. My father went home to share the news with Gram and his cousins who were waiting to hear. My mother called her mother to let her know that I had arrived but that there were some unexpected complications. No one would tell her anything, so she didn’t know what else could be wrong with me besides the obvious.
It would be a long, lonely night. At some point not long after she had settled into her room, they brought in another woman who had just given birth. She had her baby with her, and all night my mother could hear the mother and baby on the other side of the curtain, cooing and bonding with each other. Meanwhile, she had no idea where I was or what was going on. It wasn’t until early the next morning that I was brought in and she could finally hold me again.
Later that morning a plastic surgeon came in to talk to them about cleft lip and palate. The doctor was old and what he said was blunt. “Your daughter will never look normal. The sooner you accept that, the better.” Despite this harsh diagnosis, he was the one who referred my parents to the cleft team at St. Christopher’s, and the skilled hands of Dr. Hulnick. It was also sometime that morning that someone came in with pamphlets from the local AboutFace organization, which was a support group for people with various facial deformities.
Within the first week of my life, my parents took me to see the cleft team at St. Christopher’s, which was associated with Temple University. This would be the first of many times I’d endure a full day of examinations. The team made my first palatal obturator – which was an acrylic plate that fit across the roof of my mouth and allowed me to drink without aspirating. (More on all this in a future post!)
Of course I don’t remember any of this. I had to call my mom and asked her for the details. Growing up, I’d always known basic facts about my birth, like how I’d been born at 11:44 pm, and that I surprised everybody with my birth defects, but I never really asked my mom how she felt. How anyone felt. I mean, was there some level of disappointment that a perfect child was not produced?
She said she remembers feeling fearful and overwhelmed. She wondered how she would be able to provide everything I needed. There was a lot of uncertainty about what my diagnosis meant, but there was such joy at my arrival that it outweighed any negativity. Nana, (my maternal grandmother) was really supportive. She was a nurse, so she was battle-hardened when it came to medical stuff. She came up from Maryland and stayed with us for a week after I was born. My other grandmother, (Gram), lived with us (technically, we lived with HER, but I didn’t realize that until I was much older), so she was there every day and helped to hold me down while my mom applied my obturator and cleaned the junk out of my nose.
I asked my mom if she ever felt uncomfortable taking me out in public before my lip repair. She said that she wanted people to see me and that there was nothing to hide. She told Gram, “let people look if they want to look!” They took me to the mall, to the grocery store, the bank – everywhere. People would sometimes ask if I had been in an accident or if I’d gotten hurt. She thinks it was good for her to talk about it. Only once does she remember losing her cool. While waiting in line for a teller at the bank, she noticed a man who would not stop staring at me. He never said anything, he just stared. Finally she snapped at him “Would you like to take a picture?”
It was interesting talking to my mom about this. She began to recall things she had forgotten. As we talked, I realized that she might not be remembering everything with exact accuracy. For example, she recalls being told about the NFED soon after I was born. However, the NFED wasn’t started until 1981. She probably found out about it through a doctor or counselor at a hospital when I was still quite young.
I have some of the records from my birth. No pictures, but here is my Discharge report. I think the use of the term “clawed hands” makes it sound like I was a gryphon or something. Which is actually kind of cool.