On November 16, 1986, barely awake from the epidural anesthesia, my mother, Myrna, overheard some devastating news. She was conscious when she heard the baby’s first cry, and the OB-Gyn say, “It’s a girl.” Then, “She has myelomeningocele.” She remembers saying, “Oh, no.”
During her pregnancy, Mom had her first ultrasound at about five months. The results revealed that the fetus had hydrocephalus, which is commonly termed “water on the brain.” Her gynecologist told her in a very nonchalant way, “Oh, don’t worry, it’s compatible with life. You don’t have to abort it.” My mom was shocked, and felt numb. She could not believe that a doctor could utter earth-shattering words like that in such an offhand way! When Mom pressed him for more information, he replied, “As soon as the baby is born, a neurosurgeon will implant a shunt in the brain, and he or she can have a normal life. I’ll give you the name of the best neurosurgeon in Puerto Rico. You might want to make an appointment with him to secure him, otherwise, she will be sent to the public medical center.”
My parents were so full of questions and they had no idea whether this was something very common, and truly “nothing to worry about,” or whether there was a lot more to it. They had a friend whose wife was a radiologist. During the entire pregnancy, she performed a total of five ultrasounds, looking specifically for the possibility of spina bifida, which is very often associated with hydrocephalus.
And what do you think I was doing the whole time? I was in breech position. (I was a nonconformist from the beginning!) My mother recalls the radiologist mentioning “It looks as if the baby’s dancing with you.”
Before I was born, the doctors had my mom scheduled for a C-section, to be performed November 24, 1986. But, I had other plans, and decided to make an early entrance, stage left. On Nov. 15, around 9:00 p.m., my mom’s water broke. My dad called the doctor and rushed her to the hospital to soon find out that all the ORs were occupied! So they sent her to another hospital in the San Juan area, where her Ob-Gyn was already waiting for her.
After that, everything was a rush since time was of an essence. They didn’t even wait long enough for the anesthesia to fully kick-in. There was a team of specialists, including a pediatrician that my mom had already consulted with. The anesthetic eventually left Mom unable to open her eyes, but she could hear and talk. She was desperate, because she couldn’t see me. (It was her loss, since I was so darn cute!) While Mom was struggling to open her eyes, she was hearing the doctors saying, “She has myelomeningocele.” By then, it was already 12:15 a.m. (Nov. 16). Eventually, they rushed me out of the O.R., to send me in an ambulance to yet another hospital where the neurosurgeon was waiting to perform the closure of the spina bifida that same day.
My dad, my grandfather, and my aunt and uncle were able to see me only briefly before I was taken to the other hospital. The mood was somber; they were happy and sad at the same time. Everyone hopes for a healthy baby, and no one is ever prepared for the contrary. As for my mom, she was not able to see me until five days later, when she was released herself, and my dad took her to see me for the first time. She was very apprehensive, because each day that my dad and relatives went to visit her, they would tell her something different, or some other complication with me. At this point, she had no idea of what to expect.
When she finally entered my room, I was in an incubator, and I was face-down, so as not to disturb the surgery site on my lower back. My mom took one look at me and began to cry, and she told dad, “You lied to me! She looks just like you– not me! And she’s beautiful.”
To be continued…