My parents used to claim that my mother had a normal pregnancy. I was their first child and they were very excited to be parents.
As I became older and more understanding, my mother started telling me the truth about her pregnancy with me. She explained that she would sometimes experience sharp pains and cramps in her abdomen. After seeing her doctor about the cramps, she was told that everything she was feeling was perfectly normal for a pregnant woman. She figured that since this was her first pregnancy she should trust what her doctor said, even if it felt wrong.
The day finally arrived for her to go into labor, where she spent an entire Friday in the hospital. By nightfall my parents were told that my mother's blood pressure had dropped and that the baby's heart was beating irregularly. As a result, an emergency C-section had to be done.
My mother never saw me after the operation, since she had been asleep throughout it. Later, some doctors came into my parent's hospital room and told them that their baby had been born with a physical condition that was never detected during the pregnancy. They called in a specialist and he diagnosed me with Arthrogryposis.
The doctor was able to diagnose me since he had dealt with other cases similar to mine. The obvious signs that he recognized were shown in my hands, legs, feet and hips. As mentioned in the definition, Arthrogryposis involves having fixed, curved joints in multiple areas of the body. At birth, my hands were in a fist-like position and had little-to-no movement due to my locked joints. My legs were stretched out completely because my joints did not allow me to bend them. My feet were twisted outward with a club foot. The most obvious feature that stood out above all, was the abnormal way I was positioned at birth. The best way to describe this position is to say that I was born in a V-shaped position. My legs were up by chest and face, since my hips were preventing my body from stretching out completely. This is why my mother had to have a C-section instead of a natural birth.
Of course, my parents were taken aback and confused, but they were strong and held themselves together. The rest of my family was there to provide my parents with the best support possible. During the hospital stay, the doctors would come in and out to educate my parents about Arthrogryposis and about what should be done next for my personal growth and health. Casts were placed on both my legs and feet to start helping them straighten out more. I would have to go back every six weeks to have a new cast put on.
As I became older and more understanding, my mother started telling me the truth about her pregnancy with me. She explained that she would sometimes experience sharp pains and cramps in her abdomen. After seeing her doctor about the cramps, she was told that everything she was feeling was perfectly normal for a pregnant woman. She figured that since this was her first pregnancy she should trust what her doctor said, even if it felt wrong.
The day finally arrived for her to go into labor, where she spent an entire Friday in the hospital. By nightfall my parents were told that my mother's blood pressure had dropped and that the baby's heart was beating irregularly. As a result, an emergency C-section had to be done.
My mother never saw me after the operation, since she had been asleep throughout it. Later, some doctors came into my parent's hospital room and told them that their baby had been born with a physical condition that was never detected during the pregnancy. They called in a specialist and he diagnosed me with Arthrogryposis.
The doctor was able to diagnose me since he had dealt with other cases similar to mine. The obvious signs that he recognized were shown in my hands, legs, feet and hips. As mentioned in the definition, Arthrogryposis involves having fixed, curved joints in multiple areas of the body. At birth, my hands were in a fist-like position and had little-to-no movement due to my locked joints. My legs were stretched out completely because my joints did not allow me to bend them. My feet were twisted outward with a club foot. The most obvious feature that stood out above all, was the abnormal way I was positioned at birth. The best way to describe this position is to say that I was born in a V-shaped position. My legs were up by chest and face, since my hips were preventing my body from stretching out completely. This is why my mother had to have a C-section instead of a natural birth.
Of course, my parents were taken aback and confused, but they were strong and held themselves together. The rest of my family was there to provide my parents with the best support possible. During the hospital stay, the doctors would come in and out to educate my parents about Arthrogryposis and about what should be done next for my personal growth and health. Casts were placed on both my legs and feet to start helping them straighten out more. I would have to go back every six weeks to have a new cast put on.
Taking me home for the very first time was very exciting for my parents. The doctor had told them that they would have to practice therapeutic sessions with me every day. One of these therapies included laying me flat on my stomach for as long as they could. This position would help my body stretch out and hopefully help my posture.
There was support coming from the entire family in many different forms. My grandma and aunt lived with us at that time, so they were my mom’s highest support system. At the time, my aunt was working at a bank and had told her manager about my diagnosis. She told him that my family did not know what else they could do for me. He was very intrigued by this so he informed my aunt that he was part of an international organization, known as the Shriners*. He told her that they help families in need and have Children's Hospitals in different locations across the United States, which specialize in taking care of children with different conditions. He even offered to be my sponsor and fly us out to Houston, Texas. My aunt came home and told my parents the great news.
There was support coming from the entire family in many different forms. My grandma and aunt lived with us at that time, so they were my mom’s highest support system. At the time, my aunt was working at a bank and had told her manager about my diagnosis. She told him that my family did not know what else they could do for me. He was very intrigued by this so he informed my aunt that he was part of an international organization, known as the Shriners*. He told her that they help families in need and have Children's Hospitals in different locations across the United States, which specialize in taking care of children with different conditions. He even offered to be my sponsor and fly us out to Houston, Texas. My aunt came home and told my parents the great news.
At two months old, my parents flew me to the Shriner's Hospital for Children in Houston, Texas for the first of many consultations. This is where they met many specialists and nurses whom have worked with Arthrogryposis in the past. The doctors informed them more about Arthrogryposis and said that they could definitely accept me as a patient.
We returned home to keep up with our local doctors' sessions. At six months old, the doctors told my parents that they could stop coming in to have my casts replaced. Instead they were going to put me in braces to help stretch out my legs and straighten my feet all at once. Throughout this time period, my posture started getting much better and things were getting easier for my parents.
We returned home to keep up with our local doctors' sessions. At six months old, the doctors told my parents that they could stop coming in to have my casts replaced. Instead they were going to put me in braces to help stretch out my legs and straighten my feet all at once. Throughout this time period, my posture started getting much better and things were getting easier for my parents.
Before we knew it, the time to go back to Houston had arrived. This time the consultation was aimed at what the doctors could do to better the mobility throughout my body. Although they claimed that they could improve my lifestyle, they had to give my parents realistic statistics for someone with Arthrogryposis. They explained how difficult, and rare, it is for children with Arthrogryposis to walk or even learn how to walk. They told my parents that the chances of me ever walking were almost 0% and that they should not get their hopes up.
This news broke my parent’s hearts and when they told the rest of my family, they were just as hurt. One thing about my family is that they always had a lot of faith in God, especially my grandma. She had so much faith that she even traveled to her hometown in San Juan de los Lagos, Mexico to visit her favorite church. The church was called La Iglesia de San Juan. She went there to pray to the Virgin Mary (La Virgin) and make her a promise. She promised her that if she would give me the opportunity to walk in life, then she would personally bring me on my 15th birthday to meet La Virgin in San Juan de los Lagos. She also promised that she would enter the church on her knees, and remain on her knees until she reached the alter.
By the time I turned a year old, the doctors had already started talking about possible surgeries that they could perform for more flexibility in my joints. They decided that I was still too young, so they sent me home to continue my therapy sessions. For the next couple of years, I continued visiting the doctors in Houston to keep up-to-date with my progress.
When I was about two years old, my parents came to a crossroad in their lives. They were trying to decide whether they wanted another child or not. They thought it would be great for me to have a sibling to give me more love and support, and be there for me like a sibling should. Well, that is exactly what happened because before I turned three I had a baby sister. She came to us perfectly healthy and as a blessing because till this day she has never stopped taking care of her big sister (Love you!). To make things even better, I started walking! The doctors said I probably would never walk, but with the therapies from home I was able to do the unthinkable. It was a true blessing.
This news broke my parent’s hearts and when they told the rest of my family, they were just as hurt. One thing about my family is that they always had a lot of faith in God, especially my grandma. She had so much faith that she even traveled to her hometown in San Juan de los Lagos, Mexico to visit her favorite church. The church was called La Iglesia de San Juan. She went there to pray to the Virgin Mary (La Virgin) and make her a promise. She promised her that if she would give me the opportunity to walk in life, then she would personally bring me on my 15th birthday to meet La Virgin in San Juan de los Lagos. She also promised that she would enter the church on her knees, and remain on her knees until she reached the alter.
By the time I turned a year old, the doctors had already started talking about possible surgeries that they could perform for more flexibility in my joints. They decided that I was still too young, so they sent me home to continue my therapy sessions. For the next couple of years, I continued visiting the doctors in Houston to keep up-to-date with my progress.
When I was about two years old, my parents came to a crossroad in their lives. They were trying to decide whether they wanted another child or not. They thought it would be great for me to have a sibling to give me more love and support, and be there for me like a sibling should. Well, that is exactly what happened because before I turned three I had a baby sister. She came to us perfectly healthy and as a blessing because till this day she has never stopped taking care of her big sister (Love you!). To make things even better, I started walking! The doctors said I probably would never walk, but with the therapies from home I was able to do the unthinkable. It was a true blessing.
At three years old I returned to Houston for the first of many surgeries. My feet were their first concern. The doctors only did one foot at a time to prevent much pain and more time for one to heal properly. Like I mentioned before, I was born with a club foot, so the doctors went in and used screws to straighten my foot to the desired position. After the surgery I went through therapy sessions to help me regain my strength.
I kept going back to Houston to continue having more surgeries after the first one was successful.
*NOTE: For those of you that do not know whom the Shriners are or what they do, they consist of "a brotherhood of men committed to family, engaged in ongoing personal growth, and dedicated to providing care for children and families in need." (Information retrieved from www.shrinersinternational.org)