Twin born with TTTS and liver failure

Twin born with TTTS and liver failure

Twin born with TTTS and liver failure. Dr's didn't even know that something was wrong with my son until he was 5 weeks old. He had been home from the nicu for 5 days and was still a weird Yellow grey color so I took him to the er. He looked so bad. We got the run around for many months until I got ahold of a pediatric liver specialist in salt lake city. She said to call childrens Hospital in Minneapolis and tell them to get him in NOW or I would be taking him to Salt Lake. Finally at 4 months they did the testing for BA and it was negative. So we went to do a liver biopsy at 14 months. The cancelled that while we were waiting. His blood work had came back better than it ever had before so they didn't want to take the chance of bleeding. They now thought that he had cirrhosis. We have no idea what was wrong with him or how he got better but he is now almost 5 and his blood work has been perfect. My question is, has anyone else ever had this happen and had problems later in life? This is the only photo that I can find of him on my new phone.

2 Replies

  • Wow! I'm curious was he the donor twin in the case of TTTS? I have not had a similar experience, but my son, who is 22 years old this month, was born with BA. I would say since his labs are perfect, God must have healed your son.

  • Yes he was the donor. He had a few midline issues. Lip tied, tongue tied, something wrong with the duct in his liver, was something wrong with a duct to a kidney, a sacrum dimple which he still may have a tethered cord and hypospadias. We have had all of this fixed as of now. For now we just have to enjoy that his levels are doing good.

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