Myia's Fight With Biliary Atresia
Donation protected
It was one of the most special days in our lives 21.3.16 when our little princess Myia Josephine Rowe was born. She was such a tiny little petite and adorable little girl. Her Mum and Dad gleamed with excitement as they were so proud to have such a gem, as we all were.
Myia was like most babies, slept like all mothers would like them too and hardly slept at all, other times. She was so content and you could see in her parents eyes and Myia's, they were were so happy to be this little family that we all admired.
At four to five weeks old Myia became quite jaundice so off to the doctors they went, they were told its just baby jaundice and she will be fine. Myia was due for her six weeks immunisations so Myia's Mum asked why she was still jaundice, they told her its just baby jaundice she will be fine, they told her to continue putting her in the sunlight, it will go away. At seven weeks old Myia came over for a visit. Her skin was really yellow, the whites of her eyes looked yellow and even her urine was so dark it looked like orange cordial. Myia had dirtied her nappy and her faeces looked like curdled milk, very pale, almost white. Myia's Mum took her back to the doctors again and again, until she demanded to see a paedatrician, it was then that he told her that he thought she may have a very rare disease called Biliary Atresia. How could something like this be missed. They flew her down to Adelaide Childrens Hospital so tests could be done to confirm this, the results came back and it was confirmed case of Biliary Atresia.
It was in June 2016 that Myia went in for major surgery to have Kasai procedure, which the liver has ducts so that the bile it produces can drain into the intestine and help with digestion of food. When the ducts are blocked this Kasai procedure is a way to surgically bypass them and prevent further liver damage. In hoping the Kasai procedure whan done at an early age ( younger than 3 months ) about 80% have some bile flow, in nearly 30% of those patients, enough bile is able to drain from the liver so that the Bilirubin levels return to normal. In the smaller number of patients who dont benefit from the operation liver transplantation is needed sooner.
Our hearts sank at the thought of our beautiful little girl having to go through all this but her Mum and Dad were so amazing with Myia, showing her all the courage and strength in the world. Myia is an absolute warrior. The Kasai operation went well and the wonderful team were really happy with how it all went, they did have to remove her appendix and found that Myia also had Polysplenia, which is associated with Biliary Atresia, it means Myia has multiple spleens.
Myia has spent over 80 days in hospital, being flown by the wonderful RFDS at least three times and numerous trips by car every four to six weeks if not before. Several times she has had cholognitis, (infection of the bile ducts) It is so cruel, screaming with pain and unable to sleep, going on IV antibiotics for a week every time it happened.
Up until the beginning of February 2017 Myia has seemed to going along alright, having ten doses of medications daily, but unable to have anymore than 1ml of panadol for pain or fever, pretty tough for them all when Myia was teething, but they coped and were so happy. It seemed almost overnight that Myia's skin had turned yellow again, and the whites of her beautiful big eyes were too. They went back to the specialist and were told that the Kasai procedure wasnt successful for Myia. The bilirubin levels are so high it causes her skin and eyes to turn yellow and her skin is so itchy, she scratches until she bleeds, antihistimine is given, it does help but it doesn't stop it. Myia wont get any better until she has a liver transplant so they are preparing to go to Sydney to begin the process of having a liver transplant.
But still she smiles like any other child should, she laughs and the world laughs with her, but most of all the love that is in this little girls eyes is the most amazing thing in the world. Its a credit to her Mum and Dad, family and friends.
If you could possibly help Myia who has been and is about to go through the toughest time of her life, we would so appreciate it, Myia needs her Mum and Dad to be there with her throughout this all and without help it wont be possible.
So be it big or small from the bottom of our hearts we thankyou for your time and your very generous donation.
You never know, it could be you needing help tomorrow!
Myia was like most babies, slept like all mothers would like them too and hardly slept at all, other times. She was so content and you could see in her parents eyes and Myia's, they were were so happy to be this little family that we all admired.
At four to five weeks old Myia became quite jaundice so off to the doctors they went, they were told its just baby jaundice and she will be fine. Myia was due for her six weeks immunisations so Myia's Mum asked why she was still jaundice, they told her its just baby jaundice she will be fine, they told her to continue putting her in the sunlight, it will go away. At seven weeks old Myia came over for a visit. Her skin was really yellow, the whites of her eyes looked yellow and even her urine was so dark it looked like orange cordial. Myia had dirtied her nappy and her faeces looked like curdled milk, very pale, almost white. Myia's Mum took her back to the doctors again and again, until she demanded to see a paedatrician, it was then that he told her that he thought she may have a very rare disease called Biliary Atresia. How could something like this be missed. They flew her down to Adelaide Childrens Hospital so tests could be done to confirm this, the results came back and it was confirmed case of Biliary Atresia.
It was in June 2016 that Myia went in for major surgery to have Kasai procedure, which the liver has ducts so that the bile it produces can drain into the intestine and help with digestion of food. When the ducts are blocked this Kasai procedure is a way to surgically bypass them and prevent further liver damage. In hoping the Kasai procedure whan done at an early age ( younger than 3 months ) about 80% have some bile flow, in nearly 30% of those patients, enough bile is able to drain from the liver so that the Bilirubin levels return to normal. In the smaller number of patients who dont benefit from the operation liver transplantation is needed sooner.
Our hearts sank at the thought of our beautiful little girl having to go through all this but her Mum and Dad were so amazing with Myia, showing her all the courage and strength in the world. Myia is an absolute warrior. The Kasai operation went well and the wonderful team were really happy with how it all went, they did have to remove her appendix and found that Myia also had Polysplenia, which is associated with Biliary Atresia, it means Myia has multiple spleens.
Myia has spent over 80 days in hospital, being flown by the wonderful RFDS at least three times and numerous trips by car every four to six weeks if not before. Several times she has had cholognitis, (infection of the bile ducts) It is so cruel, screaming with pain and unable to sleep, going on IV antibiotics for a week every time it happened.
Up until the beginning of February 2017 Myia has seemed to going along alright, having ten doses of medications daily, but unable to have anymore than 1ml of panadol for pain or fever, pretty tough for them all when Myia was teething, but they coped and were so happy. It seemed almost overnight that Myia's skin had turned yellow again, and the whites of her beautiful big eyes were too. They went back to the specialist and were told that the Kasai procedure wasnt successful for Myia. The bilirubin levels are so high it causes her skin and eyes to turn yellow and her skin is so itchy, she scratches until she bleeds, antihistimine is given, it does help but it doesn't stop it. Myia wont get any better until she has a liver transplant so they are preparing to go to Sydney to begin the process of having a liver transplant.
But still she smiles like any other child should, she laughs and the world laughs with her, but most of all the love that is in this little girls eyes is the most amazing thing in the world. Its a credit to her Mum and Dad, family and friends.
If you could possibly help Myia who has been and is about to go through the toughest time of her life, we would so appreciate it, Myia needs her Mum and Dad to be there with her throughout this all and without help it wont be possible.
So be it big or small from the bottom of our hearts we thankyou for your time and your very generous donation.
You never know, it could be you needing help tomorrow!
Organizer
Mary-Louise Rowe
Organizer
South
