Aiden’s story begins in August 2004. He came to us a tiny 4 lbs 8 oz and as sweet as a button. Aiden was born with Gastroschisis, an abdominal wall defect that causes the intestines to remain outside of the body. We knew about the defect from our 17th week ultrasound, but what we did not know was that this was not going to be Aiden’s only battle to stay alive.

As soon as he was stable we were transported to the Children’s Hospital next door. He had his corrective surgery six days later. The surgery went well and his bowels seemed to be in pretty good shape, all we had to do was wait for them to regain function. He was put on total parenteral nutrition (TPN) in the meantime to keep him alive. We were warned about the effects of TPN on the liver but no one thought that he would be on it that long.

He became jaundiced after a few days but it was over looked because of the TPN. Aiden showed us that he was a fighter right from the beginning, enduring endless infections from his lines, a nasty systemic yeast infection and even a small bout of Necrotizing Enterocolitis (NEC). Our next nightmare began shortly after Aiden began to eat (at 3 months old). Aiden finally began to pass stool, but all everyone was talking about was how pale and stinky they were. We had a meeting with our doctors and it was decided that Aiden must have sludge in his bile ducts from the TPN. So, off he went to his second surgery on December 4th to try to flush his gallbladder and take a liver biopsy. The attempt failed because his gallbladder was collapsed so they did the biopsy and closed. His liver was green and the biopsy came back showing some scarring and changes consistent with TPN cholestasis. A few days after the operation, Aiden began to vomit bile. Although this put him back on TPN and off food, everyone seemed to be happy to see that his bile was flowing (even if it was the wrong way). They decided that he had a blockage and that it must have cleared itself.

Two weeks later, we were given the “OK” to begin eating again and after that first poop came (still as pale as ever), the testing began again. We ruled out Cystic Fibrosis, Biliary Atresia, Progressive Familial Intrahepatic Cholestasis (PFIC), and Alagille Syndrome(AGS). We had our first meeting with the gastroenterologist and she decided that it was a choledochal cyst. We had surgery two weeks later to remove the cyst but like the rest of our journey, it did not go as planned. The surgeon came to us after 3 hours in the operating room and sat us down to talk. I will never forget his words; “Sorry, it doesn’t seem to be what we thought, in fact, I’ve never seen anything quite like this.” So, Aiden was closed up and sent for two more tests; a cholangiogram, and an MRI. 

Both tests revealed dilated but grossly normal bile ducts except for the common bile duct, which seemed to narrow and almost disappear right beneath his gallbladder. We went home for a few weeks after that while they decided what to do with our new situation. They decided that a Kasai would be our best option, but they could not tell us what would happen with the liver disease after that. Would it get worse and require a transplant? Or would it stabilize?

Aiden had his Kasai on March 5, 2004, and recovered well. He is now 7 months old and weight 10 pounds. We are home now, and watching him closely for signs of any problems. Our biggest worry now is getting a bowel obstruction due to adhesions from his four previous abdominal surgeries. We see our doctors weekly for now and are hoping to see his LFT’s fall soon.

I fell in love with all the kids here and we are so happy to be welcomed as a part of the family. If ever things get rough, I know that we can come here to find support.

Here’s hoping for a hospital-free 2004!!

Aiden’s story begins in August 2004. He came to us a tiny 4 lbs 8 oz and as sweet as a button. Aiden was born with Gastroschisis, an abdominal wall defect that causes the intestines to remain outside of the body. We knew about the defect from our 17th week ultrasound, but what we did not know was that this was not going to be Aiden’s only battle to stay alive.

As soon as he was stable we were transported to the Children’s Hospital next door. He had his corrective surgery six days later. The surgery went well and his bowels seemed to be in pretty good shape, all we had to do was wait for them to regain function. He was put on total parenteral nutrition (TPN) in the meantime to keep him alive. We were warned about the effects of TPN on the liver but no one thought that he would be on it that long.

He became jaundiced after a few days but it was over looked because of the TPN. Aiden showed us that he was a fighter right from the beginning, enduring endless infections from his lines, a nasty systemic yeast infection and even a small bout of Necrotizing Enterocolitis (NEC). Our next nightmare began shortly after Aiden began to eat (at 3 months old). Aiden finally began to pass stool, but all everyone was talking about was how pale and stinky they were. We had a meeting with our doctors and it was decided that Aiden must have sludge in his bile ducts from the TPN. So, off he went to his second surgery on December 4th to try to flush his gallbladder and take a liver biopsy. The attempt failed because his gallbladder was collapsed so they did the biopsy and closed. His liver was green and the biopsy came back showing some scarring and changes consistent with TPN cholestasis. A few days after the operation, Aiden began to vomit bile. Although this put him back on TPN and off food, everyone seemed to be happy to see that his bile was flowing (even if it was the wrong way). They decided that he had a blockage and that it must have cleared itself.

Two weeks later, we were given the “OK” to begin eating again and after that first poop came (still as pale as ever), the testing began again. We ruled out Cystic Fibrosis, Biliary Atresia, Progressive Familial Intrahepatic Cholestasis (PFIC), and Alagille Syndrome(AGS). We had our first meeting with the gastroenterologist and she decided that it was a choledochal cyst. We had surgery two weeks later to remove the cyst but like the rest of our journey, it did not go as planned. The surgeon came to us after 3 hours in the operating room and sat us down to talk. I will never forget his words; “Sorry, it doesn’t seem to be what we thought, in fact, I’ve never seen anything quite like this.” So, Aiden was closed up and sent for two more tests; a cholangiogram, and an MRI. 

Both tests revealed dilated but grossly normal bile ducts except for the common bile duct, which seemed to narrow and almost disappear right beneath his gallbladder. We went home for a few weeks after that while they decided what to do with our new situation. They decided that a Kasai would be our best option, but they could not tell us what would happen with the liver disease after that. Would it get worse and require a transplant? Or would it stabilize?

Aiden had his Kasai on March 5, 2004, and recovered well. He is now 7 months old and weight 10 pounds. We are home now, and watching him closely for signs of any problems. Our biggest worry now is getting a bowel obstruction due to adhesions from his four previous abdominal surgeries. We see our doctors weekly for now and are hoping to see his LFT’s fall soon.

I fell in love with all the kids here and we are so happy to be welcomed as a part of the family. If ever things get rough, I know that we can come here to find support.