Baby Thomas on road to recovery after extremely rare toxin left him paralysed
Baby Thomas from Bournville was only six months old when he was rushed to our Children’s Hospital Emergency Department after falling ill at home.
A few days after Thomas was admitted, he was diagnosed with suspected Botulism, a rare but life-threatening condition caused by botulinum toxin. The toxin’s spores are sometimes, though very rarely, found in soil and dust and is the chemical used in the production of Botox.
Mum Alba, a Research Scientist, explained: “We noticed Thomas wasn’t feeding as much and he seemed lethargic and not himself. We took him to our local GPs as something just didn’t feel right.”
The GP advised to keep a close watch on Thomas and to go to A&E if he got any worse.
Mum Emily, a French Studies Professor, explained: “We hardly slept all night as we were so worried about him. Alba went to check on him in the middle of the night and noticed he was floppy, so we rushed him straight to the Children’s Hospital Emergency Department.”
When at the Emergency Department, doctors told Alba and Emily that they believed Thomas was very unwell and were searching for a diagnosis.
Alba explained: “Everyone said just how strange Thomas was presenting and that his symptoms didn’t match up.”
Thomas was sent for a CT scan, and shortly afterwards, he was transferred to the Children’s Hospital’s Paediatric Intensive Care Unit (PICU) where he was intubated and put into an induced coma.
Alba said: “Seeing him like that was terrible. It was just so frightening. The next few days were horrendous for us. Thomas declined rapidly and became extremely unwell. He was completely paralysed and we didn’t know if our little boy would wake up again.”
Emily added: “It was such an awful time, but from the beginning, the team were absolutely amazing, not just to Thomas but to us as a family. They talked us through every decision and explained how every machine worked. PICU can be a scary place but they made it easier for us.”
Alba said: “We can’t stress enough how fantastic everyone was, not just in terms of their expertise but in terms of their kindness and compassion.”
Thomas underwent several tests to try to determine the cause of his paralysis. Dr Amitav Parida, Consultant Paediatric Neurologist, was first to suggest that Thomas might have Botulism.
Dr Parida explained: “All of Thomas’ symptoms pointed towards Botulism, although it was something none of us in the hospital had seen before. However, laboratory tests confirmed we were right.”
Emily explained: “It was such a remarkable diagnosis by Dr Parida. Botulism is extremely rare, with only around 20 cases ever reported in the UK, but Dr Parida suspected it so quickly.”
Thanks to Dr Parida’s speedy diagnosis, Thomas could now receive tailored treatment, including the antitoxin he needed to cure him.
However, infant Botulism can only be treated with a human antitoxin, and due to the rarity of infant botulism, the only place in the world that creates the antitoxin needed for Thomas was the California Public Health Department.
Sam Wood, in our Pharmacy Procurement department, was part of the team tasked with organising the transport of the medicine to the Children’s Hospital.
Sam said: “The last time an antitoxin was needed from California was in 2018, so there weren’t well-known processes in place for this.”
He spent most of the day coordinating national authorisation for rapid customs approval and courier transfer from the USA.
Sam said: “Thanks to the team’s efforts we managed to get the antitoxin to the unit in under 48 hours. The PICU Pharmacist stayed behind and waited outside the hospital to make sure the medicine arrived.”
To the relief of Emily and Alba the antitoxin arrived at PICU and was safely administered to Thomas.
Emily said: “The Pharmacy team did a fantastic job in getting the antitoxin so quickly. Thomas was in hospital for another five weeks while he was recovering, but every day, we saw some progress. It was such a relief for us.”
“The nurses were brilliant in setting up a routine for us and getting us involved in his care, letting us give him a bath and give him a cuddle. Those moments became precious to us.”
Alba added: “The nurses really encouraged us to go home and get some sleep, and we managed to spend some time with our toddler and have a normal routine with him too.
“This really wouldn’t have been possible without Thomas’ nurses. We saw how gentle and kind they were with him and they even read him stories. We felt so reassured that he was being taken such good care of.”
Thomas’ recovery continues at home, where he has regained most his movement and is thriving with his family.
Emily said: "It was a horrible time for us but what we did get from this experience was a peek inside the world of PICU and we both feel so inspired by everyone we met there. Seeing what they do and how far they go for their patients was life-changing and will stay with us forever."
Dr Parida said: “We are so happy to see Thomas doing so well and wish him all the best in his recovery.”
He added: “Like almost all cases of infant botulism, the cause was not identified. Botulism is extremely rare but can contaminate soil or food. NHS advice is to not to give honey to babies under the age of one as it's been known to contain botulinum spores.”