Baby Jacob, from Suffolk, was almost three months old when he was diagnosed with a rare choroid plexus papilloma after a health visitor noticed his enlarged head. Now, aged just seven months, Jacob has endured 12 operations and is being monitored with regular scans. He has been left with impaired vision because of treatment and will likely grow up with life-changing disabilities. As his parents Matt and Sophie settle back at home with their son, family and friends are fundraising to help raise awareness of brain tumours.
Here is Jacob’s story as told by his parents, Matt and Sophie…
During the first few months of Jacob’s life, he was such a content, smiley baby who seemed to pretend to sleep when his big sister, Ada entered the room. He was a happy baby and showed no untoward symptoms.
Jacob was born on 14 September 2024, and from just six weeks old, a health visitor noticed his head was larger than average, which was monitored during ongoing GP appointments. Following a check up, on 3rd December, the GP made a second referral to West Suffolk Hospital and two days later we were seen in clinic.
Within 15 minutes of a CT scan, a consultant told us that Jacob had a large mass in his head, later measured at 8cm.
We’d both heard about brain tumours but had no experience of the disease until now.
Our world was turned upside down and we were devastated at the news. Suddenly, it went from just us to a bustling room full of people who told us that they were urgently trying to locate a hospital bed for our baby as they fitted him to a stretcher, whilst getting us into the ambulance.
We were blue-lighted to Addenbrooke’s in Cambridge. On 6th December, Jacob had his first operation where he was fitted with a drain on the outside of his head to help relieve the excess build up of fluid.
A week later, he had a Hickman line fitted, a second drain fitted -this time internal and they took a biopsy of the tumour which confirmed he had a choroid plexus papilloma. They said his was very rare tumour, with limited comparable cases regarding treatment for a baby of Jacob’s age and tumour size.
Each time the shunts were blocked with fluid and debris, meant another operation for Jacob. Eventually they externalised the internal shunt because it wasn’t working how it should. This drain, known as an external ventricular drain (EVD), meant we couldn’t change his nappy or move Jacob without it being clamped shut. We couldn’t even pick him up for a cuddle without getting the nurses involved to close off the drain.
Before Christmas 2024, Jacob had been in surgery five times to help manage the risk of hydrocephalus caused by a fluid build-up.
The team at Addenbrooke’s told us the tumour was grade 2 and not cancerous but wanted to see how it reacted with a low dose of chemotherapy, in theory, allowing Jacob time to grow and hoping the tumour would shrink and become less vascular. He had a few doses of chemo over four weeks. Despite this an MRI showed the tumour had continued to grow. With urgency, the course of action was changed, and it was straight onto the next treatment in trying to debulk the tumour, far sooner than originally planned.
Following a few conversations with various teams, including paediatric anaesthetists, oncology and the neurosurgeons, it became apparent just how high risk the surgery would be. It was likely Jacob could suffer a seizure, stroke and blood loss, amongst other things. We had to make a decision that no parent should have to make; to either proceed with surgery or for Jacob to receive palliative care.
We were given a quite chastening fact that if the EVD was taken away he would more than likely have no more than 24 hours to live, it was draining approximately 70ml an hour at the beginning of February. That month, he had three debulking operations in the space of nine days, totalling 49 hours. He was kept sedated in between and remained in intensive care for 18 days overall. These operations removed most of the tumour, each one concentrating on different parts of its broccoli-like shape of a large mass with a stem at the top and bottom.
It is unclear how much of the tumour remains, and Jacob will be monitored with an MRI scan every three months.
There is a possibility the tumour could grow back; however, doctors can’t say for certain because of how few similar cases there are.
The neurosurgery team were pleased with how everything went, confirming Jacob no longer has hydrocephalus. In April, we brought Jacob home which has come with some stints back in hospital due to fluid shifts causing some of the hydrocephalus symptoms to flare up, as well as a separate occasion with a temperature spike too.
We’ve had to be careful with not exposing him to illness and sickness bugs, ensuring anyone that is unwell stays away from the hospital. Before returning home we hadn’t been together properly as a family of four for more than three months with Jacob’s longest consecutive time spent in hospital being 117 days.
Jacob was born just weeks after Ada started in reception at school. We’ve tried to keep her in a routine with school pick ups and drop offs as best we can. She’s been a superstar and visited Jacob in hospital a few times. She was given a colouring book by the nurses to help her understand what her little brother is going through, explaining about intensive care and all the equipment and machines.
Jacob’s brain has changed shape and suffered damage. He will most likely experience life-long disabilities due to the trauma his brain has experienced, to what extent is unknown. He has been registered as visually impaired. He may never be able to speak, walk, or even eat without the need for an aid. All we can do is wait and see how he develops. Like any parent, we want to give him everything we can, and give him every chance to thrive, and experience joy and happiness in life.
Over the next few years, we anticipate him needing neurological rehab, specialist physiotherapy, cognitive therapy, access to speech and language therapy and specialist equipment and support. We created a GoFundMe page to help us fund the needs that may arise during his recovery.
We are eternally grateful and thankful for all the love and support we have received from family and friends. But most importantly, Jacob wouldn't be here today without the incredible team at Addenbrooke’s Hospital. The neurosurgical team, anaesthetists, oncologists, doctors, specialist nurses, physiotherapists, nurses on D2, intensive care nurses, Brainbow team and especially all the nurses and play team staff on C2; they have carried us all and continue to carry us through this - with everything we have, thank you.
No parent should have to go through what we have. As a family we understand Jacob's journey is going to be long and tough, but he is our boy, and we want to give him the world.
One of Sophie’s colleagues at Howden saw a billboard for Wear A Hat Day, and they’ve been very involved in raising awareness of the disease and their own online giving page. Many of our friends and family members have organised their own fundraiser, inspired by Jacob’s diagnosis, in aid of Brain Tumour Research.
We want to do all we can to help raise awareness of brain tumours.
Matt Foulds and Sophie Lang
April 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Jacob’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure