Joshua's Biliary Atresia Journey
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Daniel, Megan, Joshua and Louisa Vinten are a young family, living in Dunfermline, Scotland. This page has been set up in order to support the family with ongoing costs associated to Joshua’s liver condition.
Joshua was born in December 2017. At 3 weeks old, Joshua was quite jaundiced and blood tests showed that he had high levels of something called unconjugated bilirubin; which could have indicated problems with his liver. After some tests in the Royal Hospital for Sick Children in Edinburgh, he was transferred to a liver specialist in Birmingham Children’s Hospital. At just 6 weeks of age he had to undergo surgery to help correct the draining of bile from his liver and he was diagnosed with a rare disease of the liver called Biliary Atresia.
Joshua continues to live with the complications of biliary atresia. He has frequent inpatient and outpatient hospital visits, including prolonged hospital stays for intravenous antibiotics to treat liver infections. Joshua has cirrhosis (scarring) of the liver, and associated complications, such as ascites and portal hypertension. As a result of the rapidly worsening condition of Joshua’s liver, which has had an impact on his appetite and food intake, Joshua’s growth has slowed. In November 2020 Joshua had a nasogastric feeding tube put in place so that his normal meals can be supplemented with high calorie liquid feed over-night.
In January 2021, Joshua will again travel to Birmingham where he will spend a week having another liver transplant assessment. During this time a team of surgeons, dieticians and physiotherapists will decide whether Joshua needs to be put on the waiting list for a liver transplant. Due to a Covid restrictions, only one parent will be allowed to be on the ward, and so Megan and Joshua will make the journey on their own, whilst Daniel stays home to look after Joshua’s little sister Louisa.
Daniel is self-employed, and Megan left work to look after Joshua when he was diagnosed with biliary atresia. Even in the UK, where they are blessed to have such an amazing health service in the NHS, having a poorly child costs money. Being self-employed means Daniel gets no sick pay or compassionate leave. Whilst in hospital, there are costs for parking, parents’ meals, toys and books to keep Joshua entertained. Trips to Birmingham involve large travel and accommodation expenses (accommodation for parents can be provided by Ronald McDonald houses but this isn’t guaranteed) and of course all normal household bills still need to be paid throughout all of this.
If Joshua does need a liver transplant he could be in hospital for anywhere from 3-8 weeks depending on his recovery. He will then have a period of recovery at home when it is unlikely that his Dad can return to full time work immediately. Joshua will also have life-long reviews, blood tests and ultrasounds which will involve more hospital visits and time out of work for his parents.
We ask primarily for your prayers. For strength for Daniel, Megan, Joshua and Louisa as they learn to live with Joshua’s liver condition, and as they undergo another liver transplant assessment.
During Covid restrictions, as Joshua is in a high risk category it is very difficult for any of us to help out practically due to having to shield Joshua. Many of you may wish to help financially. If you feel you can give in any way financially I know that this will help Daniel and Megan hugely, and help relieve at least one burden for them as a young family.
Joshua was born in December 2017. At 3 weeks old, Joshua was quite jaundiced and blood tests showed that he had high levels of something called unconjugated bilirubin; which could have indicated problems with his liver. After some tests in the Royal Hospital for Sick Children in Edinburgh, he was transferred to a liver specialist in Birmingham Children’s Hospital. At just 6 weeks of age he had to undergo surgery to help correct the draining of bile from his liver and he was diagnosed with a rare disease of the liver called Biliary Atresia.
Joshua continues to live with the complications of biliary atresia. He has frequent inpatient and outpatient hospital visits, including prolonged hospital stays for intravenous antibiotics to treat liver infections. Joshua has cirrhosis (scarring) of the liver, and associated complications, such as ascites and portal hypertension. As a result of the rapidly worsening condition of Joshua’s liver, which has had an impact on his appetite and food intake, Joshua’s growth has slowed. In November 2020 Joshua had a nasogastric feeding tube put in place so that his normal meals can be supplemented with high calorie liquid feed over-night.
In January 2021, Joshua will again travel to Birmingham where he will spend a week having another liver transplant assessment. During this time a team of surgeons, dieticians and physiotherapists will decide whether Joshua needs to be put on the waiting list for a liver transplant. Due to a Covid restrictions, only one parent will be allowed to be on the ward, and so Megan and Joshua will make the journey on their own, whilst Daniel stays home to look after Joshua’s little sister Louisa.
Daniel is self-employed, and Megan left work to look after Joshua when he was diagnosed with biliary atresia. Even in the UK, where they are blessed to have such an amazing health service in the NHS, having a poorly child costs money. Being self-employed means Daniel gets no sick pay or compassionate leave. Whilst in hospital, there are costs for parking, parents’ meals, toys and books to keep Joshua entertained. Trips to Birmingham involve large travel and accommodation expenses (accommodation for parents can be provided by Ronald McDonald houses but this isn’t guaranteed) and of course all normal household bills still need to be paid throughout all of this.
If Joshua does need a liver transplant he could be in hospital for anywhere from 3-8 weeks depending on his recovery. He will then have a period of recovery at home when it is unlikely that his Dad can return to full time work immediately. Joshua will also have life-long reviews, blood tests and ultrasounds which will involve more hospital visits and time out of work for his parents.
We ask primarily for your prayers. For strength for Daniel, Megan, Joshua and Louisa as they learn to live with Joshua’s liver condition, and as they undergo another liver transplant assessment.
During Covid restrictions, as Joshua is in a high risk category it is very difficult for any of us to help out practically due to having to shield Joshua. Many of you may wish to help financially. If you feel you can give in any way financially I know that this will help Daniel and Megan hugely, and help relieve at least one burden for them as a young family.
Organizer and beneficiary
Miriam Vinten
Organizer
Megan Vinten
Beneficiary