MY name is Danielle and I am a 26 year old biliary atresia survivor from Staten Island, NY. Here is my story….
It was the morning of December 15,1982 and my mother was on the way to her doctor’s office for her 7 month check-up. After waiting in the examination room for over an hour, my father decided to run down to the cafeteria to get a cup of coffee. Of course the moment my father stepped out, the doctor came in. He asked my mother all the basic questions. How are you feeling? Any complications? etc. MY mother said everything was fine and never felt better. He then asked her to lay down on the table so he could do a quick examination. As he was examining her, he accidentally broke my mother’s water. My father was in the hall on the way back to her room as he heard screaming and yelling coming from the room. Doctors and staff were running in from every direction. Luckily for my mom, her doctor’s office was in a hospital. My dad ran into the room only to see blood everywhere. They rushed her into the operating room to do an emergency C-section.
I was delivered at 3:15 in the afternoon that day. While the doctors were examining me, I started turning yellow and they ordered a bunch of tests immediately. As they waited for the results, I was putting in the baby “tanning bed” to cure the jaundice.
The results were finally in and I was diagnosed with a rare liver disorder called biliary atresia. At 6 weeks old, I underwent an operation known as the Kasai procedure to replace the blocked bile ducts with a piece of his intestine. The surgeons attached 2 bags to my right side. One to collect the urine and the other to collect the bile. After spending months in the hospital, I was released but went home with the bag that collected the bile still attached to my side.
For the next 2 years, my mother was collecting and feeding me the bile from the bag. My mother said it was the worst experience of her life. She never left my side for one day. She had to quit her job to take care of me. My father was working round the clock just to make enough money to buy all my medications.
2 years after receiving all the medicines and collecting the bile, I was finally detached from the bag, and considered cured. I was known as a miracle baby. Doctors were relieved and amazed at what a fighter I was.
For the next fifteen years I was fine and never had a problem. Of course every time I had a minor cold or said I wasn’t feeling well, my mom rushed me straight to the doctor’s office. Do you blame her?
Then, one spring morning during my sophomore year of high school, I was walking to my next class when I had to stop and sit. I grabbed my stomach in pain and agony. My friends took me straight to the nurse’s office and I called my mom. I told her something is wrong, come get me right now! By the time she came to get me, the pain was a little better. She said maybe it was hunger pains or bad gas. She took me to get something to eat and brought me home to rest. I ate a hamburger from Burger King and then went upstairs to lie down. The second I laid down, the pains came back, even stronger. I screamed for my mom, and by the time she got upstairs, I was vomiting everywhere. My stomach expanding, almost looking like I was 6 months pregnant. I couldn’t even put my pants on. She put me in the car and we rushed right to the emergency room. I got out of the car almost passing out and they placed me in the waiting room. Screaming and crying in the emergency room didn’t get anyone’s attention. 6 hours later, my name was finally called. After yelling and screaming at them they took me in not realizing how serious the situation was. They paged my doctor and he called the top surgeon in NYC. Everyone came running. After reviewing all the tests, the doctor’s came over saying that it looked like someone opened my stomach and poured cement inside. I was soon blocked up, that they couldn’t figure out why I wasn’t having any pain days, weeks, even months ago. They tried to vacuum my stomach out with tubes coming from every direction. Nothing was working.
The next morning as my mom stepped out to go home and get some clean clothes, the doctors came running in and said we have to operate right now!!! I started screaming and crying telling them that they weren’t going to touch me until my mom got there. My mom came running in asking what was going on. The doctors told her I had a severe case of adhesions, which are known as scared tissue, which was blocking my bowels. There as no way around it, only to operate!
After the surgery and another scar later, the doctors said that all this scarred tissue has been building up inside of me from the surgery I have at 6 weeks old. A week and a half later I was released from the hospital.
I have been praying since that day, that I would never have to step foot in a hospital again.
With a few minor hospital visits to this day, none of which have been related to the biliary atresia, my liver is healthy and functioning well.
My stomach however looks like a road map! Scars everywhere. The worst one is from the surgery when I was 6 weeks old. The scar is under my right breast, about 8 inches long and looks like a piano. Since they didn’t have the invisible stitches back in the 80’s, the doctor’s left their mark on me. My mother claims that the scar was only 3-4 inches long when it was first done, but as I got older and grew, the scar grew too. I guess it’s a small price to pay after everything I went through.
To this day, I still am the patient to one the doctor’s that was right there in the operating room with me observing my surgery at 6 weeks old. He was a 1st year resident at the time becoming a pediatric gastroenterologist. Talk about being in the right place at the right time!
So to any of you that might be going through this, keep you head held high and stay strong!! Remember…. you are a fighter!!!!!
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