My Personal History

Part 1

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.”

 

Part 2

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.”

 

This is a photo of my very first surgery, the closing of the "myelomeningocele" (a.k.a. "spina bifida").

This is a photo of my very first surgery, the closing of the "myelomeningocele" (a.k.a. "spina bifida").

 

To be continued…


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17 thoughts on “My Personal History

  1. Hola Laurita,es Hellen! Estoy siguiendo el recuento de tu vida! Es bien interesante sobre todo porque tenemos historias similares tu mami y yo, solo que otro tipo de disability,sabes Laurita,si tuviera que borrar el pasado, tuviera que borrar a Cindy y es lo mas lindo que he tenido en mi vida! aparte de Veronica, por supuesto,despues me explicas por e-mail si crees que yo deba publicar la historia de Cindy tambien, si esto pudiera ser de informacion beneficiosa y para ayudar a otros,que crees? Cuando continuas este?! Un abrazo para tu mami, tu papi y para ti! Los quieren: Hellen, Cindy y Veronica!

  2. Querida “Gatita”:
    Tu relato es precioso. Nosotros, Eddy y yo, que estuvimos al tanto de todo lo que pasaba al tu nacer revivimos ese momento. Al verte eras la criatura mas linda que habíamos visto. Desde un principio tuvimos una química increíble y siempre nuestras oraciones para tu recuperación han estado presente. Te vimos crecer y hemos tratado de estar contigo en todos los momentos importantes de tu vida. Siempre tendrás nuestro apoyo incondicional. Este “site” está estupendo. te felicitamos y admiramos tu dedicación, esfuerzo, y excelencia al relatar y escribir.

  3. Hi! My name is Karen. We are the same age :) I just recently had a son born with SB- 11/11/09. Your blog is fantastic and very encouraging. Thank you. You sound like a beautiful gal.

    • Hi Karen! What an awesome thing to say! I’m so glad that my blog is reaching out to people like you. That really is very encouraging to me. Please keep spreading the word, and may God bless you, your son, & your family!

      Laura :-)

  4. You have an amazing story and I admire you. Keep up the good work.

    Can you please email me your email address? I have a few questions for you.

    Thanks

  5. Hi Laura,
    besides having a young 5 year old with your name, I have a 20 year old daughter called Kira who was also born with Spina Bifida.
    We live in Malta, a tiny island in the Mediterranean and things here are similar I suppose. We are lucky to have great health care which is entirely free, so Kira’s numerous stays in hopsital and surgeries were taken care of!I cannot begin to imagine what it would have been like to have to pay for all of that!Particularly as I was a single mum when I had her! Her walking aids etc are subsidised and her wheelchairs are partly paid for. still there’s a lot which needs to be done to make life more accessible for her. Her next step is to drive!Kira unfortunately doesn’t like school much and she’s still trying to find her way in adult life. I am hoping she will be in touch with you herself! You’re a great person! Keep up the energy!

  6. I love reading stories of people with Spina Bifida who are so much younger than myself, I will be 40 this year. If you do your math correctly that means I was born in 1970. Families just startedkeeps “us” at home instead of sending “us” away, my grandmother wanted that. Everything is so different now. It is so great!!! It is such a pleasure to read your blog I think I shall come and visit you often.

  7. Hola Laurita, apenas hoy descubri tu blog por medio del boletin the latinabloggersconect, Sabes que leer esa frase que tu Mami dijo cuando te vio me hizo llorar. Gracias por compartir tu historia, muy inspiradora.

  8. Laura,
    Thank you so much for sharing your beautiful story with the world and working to make life better for people with Spina Bifida. I have a little girl with Autism and I try to learn about her world and I inform people about autism. Since she was born the way I see the world has changed and because of her I became a better person. She has shifted my values and my goals and now I find nothing more rewarding than advocating for the rights of people with disabilities. So THANK YOU for opening people’s eyes and i making them realize that everyone is different but everyone is valuable because of what they decide to do with their life and because of who they are and that whatever diagnosis you have doesn’t define you.
    un abrazo
    Paula

  9. Hola Laura,
    Tu relato me emociona. Yo tengo dos hijos, Alejandro 11 y Gabriel 8. Gabriel tiene Sindrome Larsen; un desorden genetico que afecta huesos, articulaciones y musculos. La experiencia de tu Mami me recuerda la mia. Los medicos estaban preocupados por mi reaccion al ver a mi hijo. Yo no vi Larsen Syndrome, yo vi a mi nene precioso que se parecia y se parece a mi. Gracias a mi Gaby ahora trabajo para Early Steps ayudando a otras familias. Gracias por compartir tu historia.
    Definitivamente voy a compartir con mis familias del programa y amigos la informacion de tu blog y FB page.

    • ¡Gracias Doris, por conectarte conmigo! Me alegro tanto que tu hijo te haya inspirado a trabajar con Early Steps. Tengo una buena amiga bloguera, Eliana Tardío, que también trabaja para Early Steps. Tiene 2 hijos con Down Syndrome.

      Oye, no serás prima mía? Mi apellido también es Tellado.

      Espero que sigamos en contacto.

      Que Dios te Bendiga a tí y a tu familia,

      –Laurita

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