Tommy's Story

Tommy’s story

I’m starting this page on behalf of my son and daughter in law for their brave little boy Tommy. He’s been through so much in the short time he’s been with us and with the potential of him being transferred to a different hospital in another city, I wanted to start this gofundme page to help with living and hospital costs to enable both parents to be by his side without the financial strain. 

Below is a story of Tommy’s journey so far in the words of his parents…

Where do we start, from the beginning I guess…

Tommy was born at 33+3 gestation unexpectedly on Christmas Day 2020 at St Michael’s Hospital Bristol. He wasn’t breathing when he was born, but the amazing neonatal intensive care team managed to save him. He was intubated straight away and taken to the the neonatal intensive care unit to be cared for. For what we thought would have been a few weeks has now turned into 6+ months. Since birth it’s problem after problem, but he has fought every step of the way. When born he had a collapsed lung and a slight heart murmur but we were told neither we’re life threatening and his chances of survival were high. After 1 day on the ventilator he was extubated and put onto non invasive breathing support called CPAP and his lungs got stronger and were no longer collapsed. After this Tommy was moved to the High Dependancy Unit and then after that the Special Care Unit where we we’re getting him strong and feeding ready for discharge. As the weeks went on his lungs kept collapsing, fluid kept building up around them and he kept going back and forth from high-flow and CPAP to try and keep his lungs inflated and help with his breathing. His heart murmur then got worse and we were told he had both an ASD and a VSD which may need to be closed with open heart surgery but not until he’s 6/7 months old. They managed to get him stable, his breathing improved and we were getting him ready for discharge until he’s ready for his surgery. 3 times we were supposed to take him home but when the time come his breathing got worse and Tommy then ended back in Intensive Care. At this point his lungs were under a lot of pressure due to the holes in his heart and there were discussions of him having his open heart surgery sooner. After being on NICU for 3 months, he then got transferred to the Paediatric Intensive Care Unit at the Bristol Royal Hospital for Children, where he started to deteriorate quicker. They sent him to the cath lab so the team could visualise his arteries and chambers of the heart to find any abnormalities and measure the pressures. For this he was ventilated again, and the results shown that he needed his open heart surgery sooner. Whilst waiting for this he was very unstable, his heart rate kept dropping and his oxygen levels too, he picked up various infections including pneumonia and it was very touch and go for a couple of weeks whilst Tommy awaited for his next surgery. When he eventually went down for his open heart surgery they managed to successfully close his VSD and partially close his ASD, they also took a lung biopsy to investigate further as to why they’re aren’t functioning properly and kept deteriorating and he had a temporary pacemaker fitted incase of any rhythm abnormalities which is a common risk with this surgery. They were unable to close his chest due to swelling of the heart, and it was successfully closed a couple days later. A week after surgery Tommy went into complete heart block and the surgerons decided he needed a permanent pacemaker, another open heart surgery. Whilst waiting for this Tommy’s temporary pacing wires snapped twice, the first time the pacing wires connected to the atrium snapped which wasn’t too serious as the atrium was pacing at its own rhythm. The second time the pacing wires connected to his ventricle snapped and his heart stopped and we though we’d lost our little boy, but the amazing team managed to save him with a temporary fix and he then got rushed in for his permanent pacemaker the next morning, which was successful. His lung biopsy results came back but still unable to come up with a diagnosis - rheumatology, immunology and haematology then got involved to investigate further and have sent various tests and were still awaiting these results. Tommy started to progress post surgery and it worked really well, the pressures in his heart started to come down and it was just a case of trying to get him off the ventilator and back onto non invasive breathing support, over all this took around 2 months. Through all of this tommy was heavily sedated and had to be muscle relaxed and after 2 and a half months of trying to get him onto non invasive breathing support tommy managed it and was weaned off all his iv sedation and no longer muscle relaxed. We were then finally moved to the High dependancy Unit where Tommy continued to improve and eventually come off breathing support and went onto low flow and he was doing really well. We were then moved to the general ward where we were getting ready for discharge for the 4th time and he caught rsv/bronchiolitis, he was fighting this for around a week and then his breathing started to deteriorate, he ended up back on high flow, then cpap, neither helped. The Intensive Care team then came to review him and decided he needed to be moved back PICU, they tried a different form of cpap, which seemed to settle Tommy’s breathing, they then took some bloods which shown his lactate came back high so they decided to intubate him and muscle relax his again, this proved to be difficult, if it wasn’t for his pacemaker he would have had a cardiac arrest and needed to have a defibrillator to save him. Tommy then started to deteriorate further and from addition blood tests they found his liver had started to fail, his levels were dangerously high and continued to increase, the consultants called both myself and dad in to discuss moving forwards and informed us if his levels didn’t improve he will be transferred to either Birmingham, London or Leeds, he would need a liver transplant and would need to find a donor quickly or we’ll have to come to terms with the fact we need to say goodbye to our little boy. He’s had every test possible sent, and now they’re testing Tommy for HLH, another thing we’re praying he hasn’t go or that he can at least be treated for! Our little boy has been through so much in the short time he’s been with us and we don’t know how much more his little body can handle. We’re hoping for a miracle and that he has some fight left in him. He is currently stable at the moment and is being managed by various medications. We’re taking it a day at a time, and pray things can only get better from here on.

Nanny T:

“We all want our little boy home and safe, he’s yet to experience home life and is yet to meet any of the his family. He’s got some fight left in him yet, we know he has!

Thank you and we hope Tommy will be in your prayers as he is ours ”