A couple who sang the song In The Arms Of The Angel to their four-month-old baby as he died in their arms rushed forward their wedding so their “cheeky, cuddly and wonderful” boy could have the family name before he passed away.
Kate Goodall, 44, who lives in Dumfries, Scotland, with her husband, Andy, 44, said “the bottom literally fell out of our world” when their son, Jacob, was diagnosed with a rare brain tumour – an atypical teratoid rhabdoid tumour (ATRT) – at five weeks old.
Jacob underwent surgery and, after doctors were able to remove 95% of the mass, Kate said “the horror and the devastation suddenly turned into a little bit of hope” but weeks later it was discovered the brain tumour had increased in size and Jacob had developed another lump on his kidney.
Days later, on Kate’s birthday, she recalled how the couple “knew then that the time was upon them” and Jacob died the following day on November 24 2016.
Kate, who works in sales, said her little boy has “left such a legacy” and, reflecting on his death more than six years later, she is now working with the charity Brain Tumour Research to complete the ‘10,000 Steps a Day in February’ challenge to raise money to help find a cure for the disease.
“Fitness aside, my motivation to do it is Jacob, and to make sure, or at least try to make sure that, whether it’s now or in the future, other families do not go through what we have because I wouldn’t wish it on anyone,” she said.
Kate said she had a ‘normal’ pregnancy with Jacob, but she had to undergo an emergency C-section as he was two weeks late and in the breech position – which means a baby arrives bottom or feet first.
For the first few weeks of his life, after his birth on July 25 2016, Jacob had problems with acid reflux, and Kate and Andy took him to the Queen Alexandra Hospital in Portsmouth, Hampshire, where they were living at the time.
While at the hospital, one of the consultants noticed Jacob had slight facial paralysis as one of his eyes did not fully close when he cried.
Jacob later underwent an ultrasound and, at five weeks old, a mass was discovered on his brain.
“It was horrific, there is no way to describe it. The bottom literally fell out of our world,” Kate said.
“It was utter horror, and it was even worse once we (later) got to Southampton General Hospital when we discovered what type of tumour it was.”
Kate recalls how she and Andy felt “utter devastation” upon receiving the diagnosis and the couple “knew (they) were going to lose him”.
However, they were “prepared to do whatever it took to try to stop that from happening”.
Jacob underwent six-and-a-half hours in surgery on September 8 to remove as much of the tumour as possible.
“It was a very intricate and delicate surgery, but we agreed to it because you always have that thought that ‘our one is going to be the one that proves everybody wrong’, and we wanted to give him the fighting chance to be the one that proved everybody wrong,” Kate said.
Jacob then spent three weeks in the Paediatric Intensive Care Unit (PICU) at Southampton General Hospital on ventilators.
Given the couple knew Jacob’s chances of survival were extremely low, they decided to bring their planned wedding forward with a special dispensation from the Registrar General – something that is typically granted only in exceptional circumstances.
On September 16, Kate and Andy tied the knot at Portsmouth Registry Office and, after exchanging vows and updating Kate’s name on Jacob’s birth certificate, the newlyweds headed back to the hospital to be with their son.
“It really didn’t matter whether it was all the bells and whistles that we wanted,” Kate said.
“We were facing the very real prospect of losing him, (and) we didn’t want Jacob to leave us with a different surname to mine.
“It wasn’t what we wanted but, at the time, it was perfect for us.”
In October, the couple managed to drive Jacob to Kate’s hometown, Dumfries, in Scotland, to see her parents, wider family and friends, and the couple had arranged an open house where 80 to 100 people came to meet their baby.
However, when Kate’s grandfather was cuddling Jacob, suddenly, “he started to go blue”, and the couple were forced to perform CPR to keep him alive before an ambulance arrived to take him to Dumfries and Galloway Royal Infirmary.
The family remained there for approximately one week, before returning to Portsmouth, and it was discovered Jacob had developed bronchiolitis.
In mid-November, back at home, Kate and Andy were focusing on “getting him bigger and stronger” in the hope that he could have further treatment, but one day, Kate said she looked at Jacob and she “wasn’t happy with how he was looking”.
Jacob was then taken back to the Queen Alexandra before being blue-lighted to Southampton General Hospital.
“When we got there, they did a scan and it turned out he had a tumour on his kidney, which hadn’t been there before … but the original tumour was back and it was bigger than it had been,” Kate explained.
“So that 95% that they managed to get out in the space of two months meant nothing because it just came back and it came back fast and it came back bigger, and essentially, that was it – there was nothing more they could do.”
Kate held onto the hope that Jacob would make it to her birthday on November 23 so that her family could have time to travel to the hospital to say their goodbyes.
Luckily, Jacob made it to that day and, on Kate’s birthday, the family had hand casts made and drew pictures together.
In the evening, however, the couple knew that it was time to let him go.
“He kind of looked at me and his eyes had changed, and it was almost like he was saying, ‘I did it, mummy, I made it, but I’m done’,” she said.
“So we knew then that the time was upon us and we let him go the following day.
“We just cuddled him and I sang to him and we talked to him.
“The last things he would have heard would have been our voices; it was the first thing he heard and it would have been the last thing he heard.”
Kate sang In The Arms Of The Angel as Jacob peacefully passed away in the couple’s arms on November 24 – and this song was played at Jacob’s funeral on December 16 2016 at Portsmouth Crematorium.
She said she felt utter despair on the day of the funeral, adding: “That was the last time I was going see him.
“It didn’t seem real and it didn’t seem right and it wasn’t fair… Why take our boy? Why take him?
“It’s not fair and I still think it’s not fair … (and) there is something very, very different when you’re sat looking at a coffin that’s two feet in length; that is a sight that no one should ever have to see.”
Kate explains that she and Andy carry on for Jacob because he “left such a legacy” after his death and now, she is taking on the ‘10,000 Steps a Day in February’ challenge with Brain Tumour Research to raise money.
Kate hopes that, by raising money, she will help the charity to find a cure and prevent other families from going through the heartache of losing a child.
“I have always said, some day I would do something, I would do something to raise money,” she said.
“If sharing my story helps to raise even a pound extra that goes towards stopping some other family going through what we’ve been through, it’s worth it.”
To donate, visit Kate and Andy’s fundraising page here: www.justgiving.com/fundraising/foreverjacob