A couple moved their wedding forward so their baby boy with a brain tumour would die with the family surname.
Jacob Goodall was four weeks old when he was diagnosed with an atypical teratoid rhabdoid tumour (ATRT) – a rare, fast-growing tumour which begins in the brain and spinal cord.
After being told Jacob would not survive, his parents Kate and Jacob Goodall, both 44, brought their wedding forward so Jacob would die with a family surname.
They were given special dispensation from the Registrar General to marry quickly, and after exchanging vows, headed straight back to the hospital to be with Jacob.
He died in their arms when he was four-months-old – when all the family, from Dumfries, Scotland, legally had the same surname.
Jacob was diagnosed with ATRT after his parents took him to hospital with acid reflux – and a consultant noticed he had slight facial paralysis because when he cried.
One of his eyes didn’t fully close, he was also breathing noisily and had an obstructed airflow, prompting medics to investigate further.
Kate will soon to embark on the 10,000 Steps a Day in February challenge to raise funds for Brain Tumour Research.
Speaking of their rushed wedding, Kate said: “This is something usually only reserved for serving military and terminally ill adults, but if we were going to lose Jacob, I didn’t want him to go with a different surname to mine.
“It meant so much to all of us to be able to do it.”
For the first few weeks of his life, Jacob had problems with acid reflux, so Kate and Andy took him to Queen Alexandra Hospital in Portsmouth, where they were living at the time.
Kate, who works in publishing, said: “Jacob had an ultrasound scan, and we were told they had found a mass on his brain which they believed was a brain tumour.
“He was only four-and-a-half weeks old. Although hoping for the best, I think in my heart of hearts, I knew we were going to lose him.”
Jacob was taken to Southampton General Hospital where the extremely rare ATRT tumour was confirmed.
“They said Jacob had a very slim chance of survival, but they wanted to operate on him,” Kate said.
Jacob underwent surgery on September 8 2016.
“They managed to remove 95% of the tumour, far more than they thought they could achieve, which gave us some hope,” said Kate.
He spent three weeks on ventilators in the paediatric intensive care unit (PICU) at Southampton General Hospital.
On September 16 2016, Kate and Andy tied the knot at the Portsmouth Registry Office – a far cry from the festival wedding they were planning for 2017.
In October, Kate and Andy managed to drive Jacob to Kate’s hometown, Dumfries, in Scotland, to see her parents, grandpa and wider family and friends.
Kate said: “That was hugely important to me; we had a lot of laughs and fun, but it was also very emotional.
“At one point, my papa was cuddling Jacob and I noticed he had turned blue.
“There was clearly something not right and, goodness knows where it came from, but the training kicked in and we kept him going with CPR until the ambulance arrived.”
Jacob was taken to Dumfries and Galloway Royal Infirmary. He stayed there for two weeks because it emerged he had bronchiolitis.
In mid-November, Jacob was back at home when again he struggled to breathe. He needed to be resuscitated and another MRI scan followed.
Kate said: “The scan showed the tumour was back, and it was bigger than the initial tumour. They also found a tumour on his kidney. At that point, we knew it was over.”
On November 24 2016 Jacob died peacefully in his parents’ arms.
Speaking of her fundraising challenge this month, Kate added: “I want to do this for Jacob. It’s so important to me.
“If just one penny I raise helps other families avoid the heartbreak we’ve been through, then it’s worth it.
“Hopefully, the wee guy will be with me every step of the way.”
Matthew Price, community development manager at Brain Tumour Research said: “We’re so sorry to learn that baby Jacob died at such a young age from a brain tumour.
“We’re really grateful to Kate for taking on the 10,000 Steps a Day in February challenge as it’s only with the support of people like her that we’re able to progress our research into brain tumours and improve the outcome for patients like Jacob who are forced to fight this awful disease.”
