Bereaved parents have spoken of the “incredible, unbelievable” care East Anglia’s Children’s Hospices (EACH) provided for 15-month-old son Hector. Tara and Lee Howlett’s “gorgeous boy” had Alpers syndrome – a rare mitochondrial disease caused by a double mutation of the POLG gene.
It affected the mitochondria in his cells, especially his brain, resulting in uncontrollable seizures and a regression of his skills. Tragically, little Hector, born during the height of lockdown, in November 2020, died in February 2022.
He was Tara and Lee’s second son, following hot on the heels of big brother Arthur.
“Hector was a fiery little redhead and we couldn’t have been more smitten with him,” said Tara, 36.
“There were only two and a half years between him and his big brother, so we made the most of the chaos. We enjoyed a family holiday to Dorset and visited the Goodwood Revival festival.
“One of Arthur’s favourite memories was a day out punting in Cambridge. Hector was perfectly healthy for the first ten months and hit all his milestones.
“He’d never shown any signs of being unwell. Then, out of nowhere, he started having seizures and the day of the first one changed our lives forever.
“Nobody knew how to stop them but he seemed to get better after being intubated and put in intensive care at the Norfolk and Norwich University Hospital.
“We came home for ten precious days before the seizures started again. This time, he was transported to Great Ormond Street Hospital, in London.
“He was intubated again. We were told he was very sick and may not make it out of the paediatric intensive care unit. It was the most horrific time of our lives.”
Another week passed before Tara and Lee, a self-employed ground worker, received the heart-breaking diagnosis of Alpers syndrome. The couple went from having a healthy baby to being given the devastating news he would be unlikely to survive more than a few months.
They were also told that, eventually, he would lose skills like the ability to smile and swallow.
“It was incredibly difficult for us to process as neither Lee or myself are medically trained,” said Tara, a lecturer at City College Norwich.
“Suddenly, we were having to learn how to tube feed, use oxygen machines and a suction machine to manage secretions. We also had to administer a cocktail of drugs numerous times a day, all while dealing with the most awful news any parent could hear.
“However, we were very determined to get him home so we could enjoy the time we had left and make sure we created memories as a family.”
Thankfully, support was at close hand, including from the care team at EACH.
“I don’t know how we’d have coped otherwise,” said Tara.
“We wanted to care for Hector at home to learnt everything we possibly could from doctors, nurses, the EACH team and the Lily Foundation. It was scary to start with, having to deal with numerous seizures while also having to explain things to his brother, who was only three at the time.
“However, our friends and family rallied around us and we feel very lucky to have had so much support. We’re a strong family and were so determined to keep going for Hector and Arthur.
“The staff at EACH helped us with equipment and would come to our house to check on things. They were incredible. They attended appointments with us, ordered medication and equipment and helped us with forms.
“There’s so much for a family processing a diagnosis to deal with and you simply couldn’t do it alone. I honestly don’t know how the staff do their jobs but they’re so kind and couldn’t have provided better care for us or our little boy.
“They were always on the phone when things were tough and the care is unbelievable.
“We felt very much in control of his care and no-one ever questioned our wishes for him, although we also relied so much on them for advice and their experience helped us feel able to manage.”
The Howletts spent time at The Nook and were encouraged to create magical memories at places like Center Parcs and LaplandUK.
“In Hector’s last few days, the EACH team visited and their presence made us feel more confident that keeping him at home was the right thing,” said Tara, who is expecting another baby in April.
“When he sadly passed away, one of the nurses was there with us and assured us he wasn’t in pain. For all the horror we’d seen during his short illness, that day felt less scary because she was there.
“We were able to be together as a family, as he took his last breaths, and we’ll forever be grateful for that.”