- J
- J
Biliary atresia is a rare liver disease that affects roughly 1 in 16,000 births. Unfortunately our Madi is one of them. It effects how her liver processes bile, normally the liver would filter it out and through they gallbladder and out the small intestine. Well one sign is that they normally have an absent or pseudo gallbladder.
Symptoms normally start to show a month after birth. Madis started with jaundice and poor weight gain. Eventually we had lab work down that showed high liver enzymes and we were referred to a gastroenterologist specialist at Peyton Manning. At that appointment he suspected this disease and we were admitted that day. Two days later on 3/13 after some tests they decided to do a surgery called a kasai procedure to try and correct it by attaching the small intestine to the liver. We stayed at Peyton Manning for a few days after. We’ve had weekly blood tests done where her number have continued to get worse. Our specialist decided it was best to transfer care to Riley and get evaluated for transplant after considering her surgery a fail. We’ve finished all of her testing so far that they need to make sure she’s a good candidate for transplant which includes ultrasounds, echo, ekg and more bloodwork. Right now we’re just waiting on our transplant team to have their meeting where they’ll place her on the transplant list hopefully in the next few weeks.
This time has been hard on us. I’ve missed a lot of work for her surgery, aftercare, and taking her to all of her appointments. I won’t be returning at this point due to having to drop everything hopefully sometime soon to go get her new liver, followed by very frequent appointments after wards. We’re currently needing help keeping up on bills and being able to afford to stay home and care for her. All the craziness going on in the world right now is making it a lot harder on us than it would be otherwise.
Any support or help that anyone can offer would be amazing and we appreciate those that have helped us so far.
I will post updates as they come in, they will also be posted in the Facebook group “Sunshine Baby Madeline”
Thank you for the love
Symptoms normally start to show a month after birth. Madis started with jaundice and poor weight gain. Eventually we had lab work down that showed high liver enzymes and we were referred to a gastroenterologist specialist at Peyton Manning. At that appointment he suspected this disease and we were admitted that day. Two days later on 3/13 after some tests they decided to do a surgery called a kasai procedure to try and correct it by attaching the small intestine to the liver. We stayed at Peyton Manning for a few days after. We’ve had weekly blood tests done where her number have continued to get worse. Our specialist decided it was best to transfer care to Riley and get evaluated for transplant after considering her surgery a fail. We’ve finished all of her testing so far that they need to make sure she’s a good candidate for transplant which includes ultrasounds, echo, ekg and more bloodwork. Right now we’re just waiting on our transplant team to have their meeting where they’ll place her on the transplant list hopefully in the next few weeks.
This time has been hard on us. I’ve missed a lot of work for her surgery, aftercare, and taking her to all of her appointments. I won’t be returning at this point due to having to drop everything hopefully sometime soon to go get her new liver, followed by very frequent appointments after wards. We’re currently needing help keeping up on bills and being able to afford to stay home and care for her. All the craziness going on in the world right now is making it a lot harder on us than it would be otherwise.
Any support or help that anyone can offer would be amazing and we appreciate those that have helped us so far.
I will post updates as they come in, they will also be posted in the Facebook group “Sunshine Baby Madeline”
Thank you for the love
Organizer and beneficiary
Emily Bryant
Beneficiary