For most people. having their first child is an exciting event. There are the usual concerns about what could go wrong, but a normal, healthy baby is expected. When our first child. Adam. was born this was not the case. It started with a discernible hush in the delivery room.
“Just a hare lip”, replied my obstetrician.
Not able to see the baby’s face, I tried to recall any thing I knew about this condition. I relaxed as I watched the nurses clean, weigh. and measure him.
When I saw him, my heart sank. This was not the perfect baby I had envisioned - the one with the rosy cheeks, delicate lips and upturned nose. This baby’s face was disfigured. A gaping space in his upper lip extended up into his left nostril, flattening his nose. As I held my newborn son, all I could see was this defect. I spoke his name and he stopped crying immediately. I felt I was in a dream and held someone else’s child.
I wondered how this could have happened. What did I do wrong? I had taken such good care of myself. I just could not shake the guilt. There were many questions and no satisfactory answers. It was very disappointing when the local plastic surgeon came to see me in the hospital. He stood by my bed and announced “this little problem” could by fixed. He would be most happy to perform the surgery. He slipped his business card into my hand, and walked out.
I longed to talk to a mother of a child with a cleft, or even an adult with a cleft. My wish came true. A nurse told me about her son, born with a cleft lip and palate 25 years ago. She showed me pictures and told me about his upcoming marriage. It was very reassuring to talk with her.
Feeding Adam was tedious.
He took only one or two ounces every three to four hours. He could not suck, so with his head tipped slightly back, milk was squirted into the back of throat. Few individuals would try the challenge of feeding him, risking his choking and vomiting on every drop. I can’t say I blamed them – it scared me too. I was solely responsible for him when I
took him home.
My ego had suffered a major blow. I did not feel pride in showing my baby to others. Even a trip to the pediatrician was a challenge to my pride and vanity. In the waiting room I would keep Adam face hidden over my shoulder.
One month after Adam’s birth. I made an appointment to see a craniofacial team. I felt so overwhelmed by the physical and emotional demands. I was also relieved to find people who specialized in this condition. They helped my husband and I to overcome our anxieties.
The team coordinator, at the time of the initial visit, enabled Adam to drink four ounces of milk in one 15 minute sitting a far better rate than we had achieved. She taught me the tips and techniques. I was relieved, and so was Adam, especially after finishing the biggest meal of his life.
We then focussed our attention on his first surgery. At four months of age. he had an operation to repair his lip and nose. This was the surgery we most eagerly awaited. We wanted the visible deformity corrected. We longed to stroll with Adam in public without reservation or anxiety. The cleft palate would be corrected later.
In the Recovery Room. I had to read the tag on his crib to believe it was Adam. He looked so different - so normal! His old face was gone. replaced with one just like every other baby in the nursery. It was as if we had an entirely different child. Then it occurred to me - how could it be that [ not seen anything but that face? Inside there was still a child who laughs and cries and loves and is lovable. He was just packaged differently. I had only been a mother four months and already I learned the most important lesson of my life.
From AboutFace Vol 6, No 3