Ive tried 2 times to upload Pennys pics its not allowing me too. So Ill just make some comments. Pennys birthday is coming up and then after that it will be one year since her failed Kasai procedure. I am very anti-Kasai. Having lived it, experienced the aftermath of it I would advocate against it. The last year has only strengthened my opinion. Ive seen many ba babies go in for the Kasai procedure only for their parents to start with the questions immediately after. Noone is confident yet they let this get done to their baby. Usually the norm is a few months later the baby starts workups for labs and tx evals. It seems like a very unnecessary procedure if your baby will just be listed anyway. Its a huge risk on such a tiny baby. I took a huge gamble with my BAbys life when I handed her over for the Kasai. Dr N____ who thankfully ive never seen again told me Penny would die without the Kasai. Penny almost died because of it. I blindly handed her over and within 24 hours she went into acute liver failure and had a 1B status. Within a month she recovered enough for us to leave the hospital. But at 6 months old she had a liver tx. The failed Kasai is nothing for us to celebrate or be happy about. I am glad for those BAbys who the Kasai worked for. I just wish we had a choice. Do the Kasai or have your baby listed when their liver fails ON ITS OWN. More research is needed, more funding, more groups, more awareness, more education, more accountability by ignorant peds, more livers, more time.....
Posted on: Sat, 17 Jan 2015 08:11:30 +0000
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