James, the baby that taught us to never give up

It is with a heavy heart that I create this go fund me page for my brother John and his wife Michelle. John and Michelle have been through the darkest days over the past 12 weeks. What should have been a time full of joy has turned into every parent’s worst nightmare.

Today I tell the story of James (our nephew) who is now 12 weeks old. James was born on 30th November and has fought everyday since to be on this earth, at 7 days old he required an emergency liver transplant. By the time he was 12 days old, James had been in 5 different hospitals, Portlaoise, The Coombe, Crumlin, Birmingham Children’s Hospital and finally King’s College Hospital in London where he still remains. We set up this page to raise funds to support John and Michelle through their difficult journey.

Michelle enjoyed a healthy pregnancy with no complications until she went into spontaneous labour at 36 weeks. All appeared well when James was born however he developed a collapsed lung within 24 hours and was transferred from Portlaoise to the Coombe in Dublin. It was while at the Coombe that he became more unwell, as the team there did not know what was happening to James they realised he needed more specialised attention, they decided to transfer him to Crumlin ICU immediately. On his way to Crumlin James went into septic shock and John & Michelle were told they had nearly lost him. In Crumlin they identified the severity of the problem, James had a life-threatening issue with his liver and needed to be transported urgently to the UK. The subsequent days were filled with fear and worry and with so many uncertainties. As no hospital in Ireland could help the wait began for a bed in the UK to become available. All the while James was getting more and more unwell. Finally, a bed became available in Birmingham and so James, John & Michelle set off on their journey to the UK full of worry but also full of hope.

In Birmingham hospital, John and Michelle were told by the team there that there was nothing they could do to help James and after 24 hours there, James was transferred to King’s College Hospital in London where he has remained.

In King’s College London, John, Michelle and James waited 3 weeks for a donor liver to become available. James underwent the risky transplant surgery and initially all appeared to go well. However, in the following days, James became unwell again and John and Michelle were given the heartbreaking news that James had experienced complications and unfortunately the transplant was not a success. James was put back on the super urgent transplant list and lived without a liver for 48 hours. This is unheard of and astounded the team at King’s. Nobody could tell if he would survive but James defied all the odds and fought on. When another donor liver became available James underwent a second liver transplant surgery and is still fighting on. We are and will be forever grateful to the donor families who in the midst of their tremendous grief have selflessly donated their loved one’s organs to help another family.

From the day James was born, he has never been held properly by either of his parents. Since his journey by air ambulance to the UK at just 12 days old, he has spent countless days on a ventilator, underwent two liver transplants and has been in theatre 8 times. He has undergone test after test and countless transfusions. He remains in a critical condition in the intensive care unit in London. No baby or parent should ever have to go through what John, Michelle and baby James are going through, but every day James shows his strength, every day he surprises us with what he has been through and continues to go through. The days that he occasionally opens his eyes and the days he grips Michelle and John's hands fill us with hope and is enough to tell us that he is still in there and still fighting, so James we remain strong with you.

During all of this time, John and Michelle, on multiple occasions, thought that they had lost James. They have watched their little baby go through some unbelievable things over recent weeks. They have spent countless hours at his bed side. The week of his transplant was a week of sleepless nights and not leaving the hospital for fear of what the team would say next, all the while not knowing whether James was going to make it. Every day is filled with uncertainty. They tell us that James will spend the next number of months in London, and we don’t know right now what life will look like after that. John and Michelle have been told that this liver will only last James approximately one or two years at which stage he will require another liver transplant. Michelle is a blood match with James and has already spoken with the surgeons. When the time comes, she will donate 20% of her liver to James which will involve more surgery for them both with huge risks involved.

For the past three months Michelle and John have been forced to stay in London away from their home, their family and support network. They have two other boys at home in Ireland who are 12years and 16 months old. Every day they are not able to be with them is another reminder of the difficult situation that they and their 3 boys are continually faced with. Christmas looked very different this year sitting with James at his hospital bedside missing their boys and families at home. No parent should ever have to be faced with this heartbreak.

Due to the need for John and Michelle to be in the UK with James their income has reduced significantly and their expenses have increased. As a family we ask for your help in supporting John and Michelle as they continue this journey with James. The future for James right now is very uncertain but we do know he will need a lot of support. John, Michelle and baby James have a long road ahead. Your donation will be greatly appreciated and if you are not in a position to donate we ask that you keep James in your prayers.

Any funds raised which are not used to support John and Michelle with expenses incurred as a result of needing to be in the UK with James, or for any future needs James may have as a result of his illness, will be donated in full on your behalf to the hospitals and charities who have supported them throughout this journey.

We would like to Thank everyone for their support, kind messages and prayers as we know Baby James has touched everyones hearts.