The Vascular Birthmarks Foundation
Ask the Adult Rep in Spanish
I was born in Cuba on June 14, 1950. I took more than a month before my father and mother noticed the big red mark I had on my left ear and scalp.
Suddenly the great happiness of having their first child turned into worry and sorrow. I had been born with a malformation they did not know what it really was. My mother cried every night in the bathroom hiding from my father. She was totally devastated.When my dad found out and told my mother it was a birthmark that is was a benign tumor and that at the moment science did not know how to treat it , just had to be left alone and that eventually it will go away. Years went by and it did not go away, it grew and changed color. My father, as a doctor, consulted every dermatologist, and every pediatrician he could reach in Cuba and Spain, and they all told him the same; ‘Watch and See’ for my dad this meant NO HOPE!I became an overprotected child by my father, when we went to the beach, he put a hat on my head and I had to stay under a palm tree. I could only get into the water early in the morning or late in the afternoon when the sun was milder. I watched my friends play in the water and shed many tears, many times. I guess that is the reason why I now hate the beach.As a young child and teenager I refused to comb my hair up in a ponytail because everybody stared at me and asked, with a terrible pitiful tone, if I had been burned or hurt, sometimes they asked too many questions that made me cry and even hate the world!
My dad combed my hair in a ponytail and forced me to face the situation, responding to those questions that it was a birthmark, that it was given by God so I would not get confused if lost with another similar girl with the same name and looks. I believed him and for many years to come I responded in the same manner. Now is different, the years and the cruel attitude of people made me tougher and indifferent to their curious questions about this red and bulky stain I was born with and which I hated with all my soul. I prayed for years and made promises and Novena and so God will make it go away. My dad in a way became my hairstylist, he had to approve of the ribbons, rubber bands or anything that I used on my hair, no direct sun to hit me, I had to wear a hat, etc.
As I grew up and my permanent teeth were coming out I bled during the night and many nights I woke up to a bed soaked with blood, because I had some of this malformation on my gums. When I bled, I was taken to the doctor and they ran lab. tests for internal bleeding but they all came back negative. Doctors, including my Dad, could not believe the great amount of blood it usually came out of my ‘Hemangioma’.In 1961 when I was 11 years old and my brother seven we were sent alone to the United States with the Catholic Church to escape Communism. We came without our parents, the group was known as "PETER PAN" My father was a physician, a Pediatrician and my mother a Pharmacist and a Registered Nurse.
They could not leave Cuba at the time for political reasons, they were opposed to the New Revolution’s lack of freedom and declared atheism also Castro did not let any professional in the Medical field to leave the island either, so we really believed we will never see our parents again. They were desperate not only because we were away in a strange land but mainly because of my Birthmark condition.We were taken care by Dr. Novak and his wife of Alexander City, Alabama while our parents were trapped and trying to escape the island. We did not speak any English. It was truly traumatic. We were being temporarily adopted by a really rich, caring and good-hearted family that I could not tell them of my ear and scalp and the bleeding, because they spoke no Spanish and we Spoke No English. A nightmare! My brother cried all the time. I did too when he felt asleep. The more I cried the more the 'Hemangioma' on my scalp and ear became deep red, and dilated, it became very hot with fast pulsations. I thought it was going to explode and I will bleed to death.Through my life I have suffered episodes of bleeding, but this time not of the birthmark on the ear and scalp, but of my throat and gums, that is when we found out the birthmark extended to the right side of the throat and left side of the gums in the back.
In 1971 I was a student at the University of Puerto Rico, and while on a study trip of Modern Art to New York City, blood came out of my throat I had to return to San Juan, because I was bleeding so much it became a hemorrhage. The doctors in Puerto Rico did not know what to do. The ENT doctor, my dad and the Emergency room doctor were amazed at the great amount of blood coming out of my throat. The cans stop the bleeding with a coagulant injection direct to my throat, something the Doctor has never done before.
By this time I was a traumatized young woman with is a terrible feeling of being alive with the uncertainty that next day I could be soaked in blood and dead, before my time.
I learned how to live fast and passionately, The AVM ruled my life, deep down inside I was always sad and anxious, as waiting for something bad to happen at any moment, not knowing where to go, whom to talk to or what to do. It was a desperate feeling of impotence and frustration.
In 1981 I had my only son, he was 9 pounds 15 ounces, a really big baby for me. He had to be born by C-section. The last month of my pregnancy I had terrible pain in my throat. Nothing helped me. The doctors did not know why. Ten months later, I started to bleed from the right side of my throat, the blood came out with a lot of strength and it was constant. As I had to swallow all that blood, my stomach became very upset, I felt like I was having or rocks inside, I coughed and the bleeding became worse. I lost 26 pounds in three weeks, I cried every day, I did not have the energy to open my eyes, I thought I will die.
I started to pray and pray, and one morning I had the impulse to open the Phone Directory
Under Ear, Nose and Throat doctors for the University of Miami School of Medicine there I found listed an ENT Professor Dr. Antonio Jose Maniglia. I went to see him. He treated me with Lasers. He was successful and the bleeding stopped.
In 1995 the AVM on my left ear started to grow, it bled sometimes. I started to see every six months Dr. Goodwin at the University of Miami, and ENT oncologist, Chief Doctor of the University Sylvester Center, he said nothing could be done, just watch and see. The growing continued and by 2005 it bled so much again I lost my mattress and pillows. I began to worry a lot. I felt miserable.
One afternoon in 2005 I was reading ‘SELECCIONES’ that is READERS DIGEST in Spanish and found out about Dr. Waner and his miraculous surgeries on Hemangiomas and AVMS, I started to look for him on the Internet and found the VASCULAR BIRTHMARK FOUNDATION. Immediately I sent Dr. Gregory Levitin an Email
With some pictures of my ear and scalp. Days later he mailed back telling me. S I did not have a HEMANGIOMA that
It was an ARTERIOVENOUS MALFORMATION. Wow! was I confused, he explained that they were related but they had different treatments and that I needed a plan. His words finally gave me hope.
On June 26th. 2006 I arrived in New York City with an MRI and my heart full of joy and sorrow at the same time, it was a difficult feeling to express, I wanted to tell the Dr. Waner and Dr. Levitin before they said anything, if they could help me or not, how much I have suffered, how my father died in 1991 with the immense worry of not being able to help me find a cure, of how this Birthmark had ruled my life and how much it had affected me emotionally, socially and spiritually. They told me they could help me, that they could remove the AVM with minimal risk. I felt I was given back the opportunity to be born again normally this time, a last chance, a final solution to all my life worries. I will never forget Dr. Waner and Dr. Levitin faces, their smile, their support, specially from Dr. Levitin, since then, I guess I am bonded to them for life. On November 14, 2006, I went to surgery at Roosevelt Hospital with a unique team of doctors, it was difficult for me and for them too, but I went with faith in God and in all of them, they knew I trusted them 100%.
First Dr. Waner told me he will not open my scalp, that he will only remove my ear growth but a different story was when in the surgery room they saw that my arteries where so dilated that they had to open my scalp and fix them. if I was to live longer, my heart could not tolerate for many years the big effort to pump all the blood in the condition my arteries were.
I became a challenge at that point, entubation was also another delicate problem, since I had an Experimental repaired done with lasers to my airways in 1983 nothing could disturb it because there was a high risk that my throat could bleed again. Seven days later I was on a plane back to Miami.
Well I made it, the doctors made it, I am now cured !
My heart is full of gratitude to all the doctors, nurses, and Dr. Waner’s office staff for all their love, their caring, their patience and tolerance with me and my condition.
My eyes fill with tears when I remember Esma, Cheryl, Sonya, Dr. Alejandro Berenstein, Dr. Waner and most of all Dr. Gregory Levitin. I am compromised because of them, because of what they did for me, because of my life suffering. I need to give something back of what God and they gave me and the best way is to help others have hope, and strength to find a cure to fight back any obstacle; because it is the only way to finally be FREE!