Parents of triplets talk about the medical diagnosis that changed their lives

Young Carers, dad and mum Mark and Ruth Higginson, with children (l-r) Josie, Amelia, Phoebe, and Ja

Young Carers, dad and mum Mark and Ruth Higginson, with children (l-r) Josie, Amelia, Phoebe, and Jamie Higginson, at their home in St Ives, - Credit: Archant

When their triplets, Amelia, Phoebe and Jamie were born in September 2007, Ruth and Mark Higginson, were filled with joy. Within six months, however, an exhausted Ruth had suffered a breakdown as she struggled to cope. Two of the babies cried constantly and were failing to thrive and had just been given a medical diagnosis that would change all their lives for ever.

For the first few weeks of the triplet’s lives, Ruth and Mark Higginson, of Dart Close in St Ives, coped well. They also had a one-year-old daughter, Josie, so daily life was an endless cycle of feeding and changing nappies. They were exhausted, but contented themselves with making plans for the future - looking forward to the day when the triplets would take their first steps, imagining them walking to school in matching outfits and all four children playing together. But gradually Ruth became concerned about Amelia and Phoebe who were failing to keep up with Jamie.

The girls were losing weight, had severe nappy rash that wouldn’t heal and it was impossible to settle them. When they were six months old, Amelia and Phoebe were admitted to hospital for tests.

“It was extremely difficult to watch Jamie thriving but the girls not keeping up,” said Ruth.

The tests were not conclusive but it became clear that both girls were severely disabled and would need 24-hour care for the rest of their lives.

“At that point I just couldn’t stop crying and I had a breakdown - I was in complete shock and it felt like I had been hit by a truck,” said Ruth.

“It was similiar to the griving process. I felt like I had lost my girls. Lost all those hopes and dreams for the future and all that potential of what they could have become.”

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A few months ago, Ameila and Phoebe were diagnosed with a rare genetic mutation called Grin2b which is a severe neurological development disorder.

They are thought to be the only children in the UK, possibly the only twins in the world, to have the condition.

Now aged eight, they are unable to communicate, need wheelchairs to move around and their food and drink has to be administered via a tube into their stomachs. They do not have a regular sleep pattern, are doubly incontinent and have scoliosis (curvature of the spine).

“Sometimes life is crazy, we can’t do things on the spur of the moment and just leaving the house is a mamouth task,” explained Ruth.

Jamie and Josie, aged 9, are devoted to their siblings and without the practical help and support they offer Ruth and Mark, the couple would find it almost impossible to manage.

Ruth says Jamie and Josie, who attend Wheatfields Primary School in St Ives, started helping to care for Amelia and Phoebe when they were four or five years old.

“Amelia and Phoebe go to a foster carer midweek, but spend the rest of the time at home where Jamie and Josie help by using a syringe to give their sisters water via their tube, which needs to be done eight times a day each, as well as operating their feed pumps. They operate a lift on their minibus when they go out, ensuring their wheelchairs are securely clamped.”

Ruth, and Mark, who is a postman, get very little sleep at weekends, on average only four hours, but Ruth is determined the family will enjoy activities at the weekend just like any other family.

“Josie and Jamie will help by pushing a wheelchair, and it can take up to an hour if Amelia and Phoebe need to be changed, which Josie helps with.

Josie and Jamie do have extra responsibilities which other children their age don’t have, but it’s teaching them to be responsible. We want them to enjoy as normal a childhood as possible. This is our normal family life and Jamie and Josie have a great input into providing care for their sisters Amelia and Phoebe who we all love very much, and wouldn’t want any other way. Jamie is a natural at it, I don’t know if it is because of his bond with the triplets, all being together in the womb. I am very proud of them.”

There are more than 700,000 young carers in the UK who provide around-the-clock care for siblings, parents and friends with a range of social conditions and problems.

According to Carers Trust Cambridgeshire, this army of young people who give so much to society can sometimes go unrecognised – which means they may be denied vital services and support – and also miss out on aspects of their childhood, including school, due to the demands of their caring role.

The trust will take part in a national Young Carers Awareness Day on January 28 to raise awareness about the issues and to highlight the support available.

Tracy Hyland, head of Young Carers and Young Adult Services for Carers Trust Cambridgeshire, said: “We want to use Young Carers Awareness Day to get everyone talking about the thousands of young carers like Josie and Jamie who are so often unidentified, and who miss out on vital services and support they are entitled to. We aim to communicate who young carers are, what they do and what they have missed out on in their childhoods as a result of their caring role. These young people often go unnoticed, but provide an invaluable service for their families and communities.”

Carers Trust Cambridgeshire held its first Young Carers in Schools conference at Hinchingbrooke School in November last year in order to identify pupils across the region who have family caring responsibilities at home. It is estimated there are more than 2,000 young carers aged five to 25 in Cambridgeshire – as many as two pupils in each class who help to care for someone.