Gastroschisis

Hello world!

I’m Olivia Lillian and I am a gastroschisis survivor. I’m here to share my story and meet other people who have experienced the same thing. It’s nice to hear other people’s story and know I’m not the only one.

I’m currently waiting for my medical records from my birth, but so far I will share what I currently know

I was born on January 31, 1990, about 2-3 months before my due date. My mother was 22 and my father was 33, and I’m their first child. I had found out that they didn’t know until my mother had an ultrasound and the doctors could not see me at all. They had to do an emergency C-Section and lo and behold I was born with my intestines outside my body. I was a mere 3-4 pounds. Right away the doctors said there was no hope or any point in trying to save me with the condition I was in. My father became so enraged he screamed at the whole hospital to “save my kid, fix my kid!” The doctors scrambled and tried to do what they could. Thank goodness I spent 3-4 months in the hospital with doctors doing all they could to save my life. My intestines were put into a sack that was held up high so my organs could slowly go back into my body. My whole face was covered with a breathing mask, and I had needles all over my body. I also had a feeding tube inserted right next to where my scar is on the lower left side. Also, from my understanding I was put on a variety of medication which damaged my hearing. I suffer from sensorineural hearing loss which impaired my speech as well.

While I was in the hospital, my parents had gotten married on March 3, 1990. After I got out, my father had to rush back to work to help pay bills and care for me. Unfortunately my mother did not properly care for me and I endured more illnesses. I later found out that my mother had been abusing alcohol and a variety of drugs during her pregnancy with me. Less than a year later my dad took me and raised me as a single parent doing all he could in his power to make sure I could be healthy.

Unfortunately, 21 years later and I have been in pain and discomfort for years! My scar has shrunk to about 3-4 inches but is very deep and very hard. I constantly have cramping, stabbing, and a pinched nerve feeling  in my scar area. Most of the time the pain is so bad it puts me in the fetal position in tears. In even rarer cases, the pain radiates from my stomach/chest to as far as my left shoulder, down my left arm. I have been in and out of many different doctors and hospitals yet no one can properly diagnose me with ANYTHING. Although each doctor has seen and felt my scar and scratched their heads at my condition, I can’t even get sent to a specialist. It’s hard to explain my condition and birth to doctors especially if they have never heard of it. It’s hard to eat, have bowel movement, pass gas, exercise, or anything to do with my stomach area. I have tried to change my diet, take vitamins, stay in shape, yet nothing improves my pain and discomfort.

I am wondering if the scar tissue could be causing not only pain, but other issues in my stomach. I know I don’t have a complete bowel obstruction because I can go “potty” sometimes. But I could go days without a bowel movement and sometimes if food is trying to pass through I get pain like a pinched nerve right where my intestines are. I have no explanation for when the pain radiates up my chest, to my left shoulder and arm but it has happened multiple times, and almost feels like a panic/heart attack. I even have unstable angina symptoms when that happens. I also don’t know if I can get pregnant or even be healthy enough to eventually have a child or more.

I wish there was SOME way I could get a diagnosis and proceed with some sort of treatment. This is severely affecting the quality of my life in ALL aspects from daily life to my work life.

I live in Seattle, Washington, USA and was born at Loma Linda Hospital in Loma Linda, California, USA.

On a brighter note, I was born an artist (no not another starving one ). A jack of all trades, a master at nothing type of artist. I love creating jewelry, working with clay, drawing, painting, photography, making movies! I also love to experiment with other things I wouldn’t normally do. I was fluent in sign language but sadly forgot a lot after moving across the country from New York, NY, USA to Seattle, WA, USA.

Overall I feel like a strong person and I’m glad to be alive. I intend to do something productive and positive with it and I hope that I can help people in some way. It’s good to know that I’m not alone and there are people I can talk to, and people can talk to me as well
If anyone has any questions or help for me, please send me an e-mail at: aquariileonis@gmail.com. You can also find me on Facebook at: http://www.facebook.com/aquariileonis. I have photos of my birth (not really graphic or gross) if you’d like to see!

\|,, Peace and  \|,,| Love,

Olivia Lillian

PS: It’s super late so sorry if I didn’t make sense! >_<

About Olivia Lillian

Hello world! I'm Olivia Lillian and I am a gastroschisis survivor. I'm here to share my story and meet other people who have experienced the same thing. It's nice to hear other people's story and know I'm not the only one. I'm currently waiting for my medical records from my birth, but so far I will share what I currently know :) I was born on January 31, 1990, about 2-3 months before my due date. My mother was 22 and my father was 32, and I'm their first child. I had found out that they didn't know until my mother had an ultrasound and the doctors could not see me at all. They had to do an emergency C-Section and lo and behold I was born with my intestines outside my body. I was a mere 3-4 pounds. Right away the doctors said there was no hope or any point in trying to save me with the condition I was in. My father became so enraged he screamed at the whole hospital to "save my kid, fix my kid!" The doctors scrambled and tried to do what they could. Thank goodness I spent 3-4 months in the hospital with doctors doing all they could to save my life. My intestines were put into a sack that was held up high so my organs could slowly go back into my body. My whole face was covered with a breathing mask, and I had needles all over my body. I also had a feeding tube inserted right next to where my scar is on the lower left side. Also, from my understanding I was put on a variety of medication which damaged my hearing. I suffer from sensorineural hearing loss which impaired my speech as well. While I was in the hospital, my parents had gotten married on March 3, 1990. After I got out, my father had to rush back to work to help pay bills and care for me. Unfortunately my mother did not properly care for me and I endured more illnesses. I later found out that my mother had been abusing alcohol and a variety of drugs during her pregnancy with me. Less than a year later my dad took me and raised me as a single parent doing all he could in his power to make sure I could be healthy. Unfortunately, 21 years later and I have been in pain and discomfort for years! My scar has shrunk to about 3-4 inches but is very deep and very hard. I constantly have cramping, stabbing, and a pinched nerve feeling in my scar area. Most of the time the pain is so bad it puts me in the fetal position in tears. In even rarer cases, the pain radiates from my stomach/chest to as far as my left shoulder, down my left arm. I have been in and out of many different doctors and hospitals yet no one can properly diagnose me with ANYTHING. Although each doctor has seen and felt my scar and scratched their heads at my condition, I can't even get sent to a specialist. It's hard to explain my condition and birth to doctors especially if they have never heard of it. It's hard to eat, have bowel movement, pass gas, exercise, or anything to do with my stomach area. I have tried to change my diet, take vitamins, stay in shape, yet nothing improves my pain and discomfort. I am wondering if the scar tissue could be causing not only pain, but other issues in my stomach. I know I don't have a complete bowel obstruction because I can go "potty" sometimes. But I could go days without a bowel movement and sometimes if food is trying to pass through I get pain like a pinched nerve right where my intestines are. I have no explanation for when the pain radiates up my chest, to my left shoulder and arm but it has happened multiple times, and almost feels like a panic/heart attack. I even have unstable angina symptoms when that happens. I wish there was SOME way I could get a diagnosis and proceed with some sort of treatment. This is severely affecting the quality of my life in ALL aspects from daily life to my work life. I live in Seattle, Washington, USA and was born at Loma Linda Hospital in Loma Linda, California, USA. If anyone has any questions or help for me, please send me an e-mail at: aquariileonis@gmail.com. You can also find me on Facebook at: http://www.facebook.com/aquariileonis. I have photos of my birth (not really graphic or gross, just hospital photos) if you'd like to see! On a brighter note, I was born an artist (no not another starving one :)). A jack of all trades, a master at nothing type of artist. I love creating jewelry, working with clay, drawing, painting, photography, making movies! I also love to experiment with other things I wouldn't normally do. I was fluent in sign language but sadly forgot a lot after moving across the country from New York, NY, USA to Seattle, WA, USA. Overall I feel like a strong person and I'm glad to be alive. I intend to do something productive and positive with it and I hope that I can help people in some way. It's good to know that I'm not alone and there are people I can talk to, and people can talk to me as well :) \|,, Peace and \|,,| Love, Olivia Lillian PS: It was really late at night writing this but I will go through and edit later >_<

• Web
|
• More Posts (1)