Dumfries couple push forward wedding before baby boy's death from extremely rare brain tumour

A couple have told how they rushed forward their wedding to ensure their baby boy would have the family name before he died of an extremely rare brain tumour.

Jacob Goodall died from an atypical teratoid rhabdoid tumour (ATRT) when he was just four months old.

Parents Kate and Andy, from Dumfries, decided to bring forward their wedding using a special dispensation from the Registrar General to ensure Jacob would be given the family name on his death certificate.

Kate, 44, 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.

His parents took him to Queen Alexandra Hospital in Portsmouth, where the family were living at the time.

A consultant noticed Jacob had slight facial paralysis which was indicated by the fact one of his eyes didn’t fully close when he cried.

He was also breathing noisily and had an obstructed airflow.

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.”

The diagnosis of the extremely rare ATRT tumour was confirmed after Jacob was taken to Southampton General Hospital.

Kate with Jacob in Hospital. Brain Tumour Research

Kate said: “They said Jacob had a very slim chance of survival, but they wanted to operate on him. In early September, Jacob underwent his surgery. They managed to remove 95% of the tumour, far more than they thought they could achieve, which gave us some hope.”

On September 8, 2016, Jacob had surgery and spent three weeks on ventilators in the Paediatric Intensive Care Unit (PICU) at Southampton General Hospital.

On September 16 the same year Kate and Andy were able to tie-the-knot at Portsmouth Registry Office.

The wedding was a far cry form the festival wedding they had been in the early stages of planning for 2017 and, after exchanging vows, the newlyweds headed straight back to the hospital to be with Jacob.

In October 2016, Kate and Andy were able to drive Jacob to Kate’s hometown in Dumfries to see her parents, gandpa 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 were stayed for two weeks because it emerged he had developed 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.”

Jacob died peacefully in his parents arms on November 24, 2016.

Kate is now working with the charity Brain Tumour Research and is doing the 10,000 Steps a Day in February challenge to raise money to help find a cure for the disease.

Brain tumours kill more children than leukaemia and any other cancer, yet historically just 1% of the national spend on cancer research has been allocated to this disease.

Kate is set to embark on the February fundraiser and said: “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.”

Brain Tumour Research funds sustainable research at dedicated centres in the UK and also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours.

The charity is the driving force behind the call for a national annual spend of £35m in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia. It is also campaigning for greater repurposing of drugs.

Anyone wishing to support fundraising campaigns can find more information on the charity’s website.

Kate has also set up her own JustGiving page for anyone wishing to support her campaign.