After Teddy was born with a rare genetic condition known for affecting bone health, he spent seven months in Addenbrooke’s Paediatric Intensive Care Unit (PICU) – during which time doctors saved his life several times.
Parents Claire and James Wroe faced many dark times and their experiences have helped shape a new digital tool to aid others.
Baby Teddy with parents Claire and James Wroe, from Northstowe. Picture: Cambridge University Hospitals
Following Teddy’s birth last November, he was on a ventilator for five days, diagnosed with a collapsed airway and by March needed a tracheostomy to breathe through the neck. Seizures compounded his challenges and then an MRI confirmed he had brain damage.
As he spent more time in PICU, he gained weight and stabilised enough to go home last week.
While exciting, this was a daunting prospect for his parents, and Teddy needs ongoing care.
He sleeps in a special cot in the family lounge, needs 24-hour support by his parents supported by a live-in nurse and when he is well enough to go out in a buggy, he will need an emergency ventilator, oxygen, a feeding pump and medication.
Claire, from Northstowe, said: “The care at PICU has been outstanding, and the staff go out of their way not just for Teddy, but for the parents too. I will never be able to thank them enough for what they have done.
Baby Teddy
“Coming home is like a new beginning for Teddy, since he has been in hospital from virtually the time he was born. He will always be vulnerable to illness, but he is growing, putting on weight, happy – and we love him.”
Claire is among the parents who have now provided feedback on an app, called My PICU Story, which they used while in hospital.
Developed by Addenbrooke’s clinicians, the digital tool is designed to help parents thrown into shock, fear and weeks of uncertainty when their critically ill child is rushed into intensive care.
It offers instant, practical help and answers to pressing questions, and support for stressed parents in danger of sliding into long-term mental illness.
Claire, who gave up her job as a child minder to stay at Teddy’s side, said: “We spotted signs for My PICU Story as soon as we arrived and, while we had little idea what it was, we soon found it useful. I would recommend it to any other parent who found themselves in similar circumstances.
Baby Teddy
“Finding yourself with an extremely sick child is daunting and anything that can help is very welcome.”
Project lead, PICU consultant and University of Cambridge associate professor, Dr Nazima Pathan, said about 17,000 children are treated in intensive care nationally each year.
“The stress of a PICU admission doesn’t end when the child gets better,” said Dr Pathan. “A third to half of parents go on to develop post-traumatic stress, anxiety, or depression. It is heartbreaking to families and costly to the wider economy with an estimated impact of around £14,000 per parent each year, and £1,100 in direct healthcare costs as a result of the need for support from GPs and community mental health services.
“This equates to around £15m a year for treating the 30 to 50 per cent of parents who go on to develop significant PTSD after their child’s PICU admission.”
Claire and James Wroe, from Northstowe, with Teddy. Picture: Cambridge University Hospitals
My PICU Story is “the first co-designed digital support tool for parents of critically ill children” and was developed over two years with the help of doctors, nurses, psychologists, counsellors, parents, Addenbrooke’s Charitable Trust (ACT) and RJDM, a digital media and animation company.
It provides coping and sleep tools informed by cognitive-behavioural therapy (CBT) and exercises that help to calm the nervous system and manage overwhelming emotions like stress and anxiety.
It offers opportunities for journalling, sibling resources and plain-English explanations of intensive care.
There are sections where parents can tell staff about their child, post messages and pictures to a wall so others can send reactions and stickers, a Q&A section, and an illustrated story to read to children about PICU written by PICU senior sister Clare King, helping siblings understand what is happening when a child is in the PICU.
My PICU Story
Claire shared it with her three children from a former marriage, Riley, 13, Charlie, 12, Alfie, 11, who were worrying at home, to explain what the PICU is and how it helps babies like Teddy.
Practical information on accommodation, visiting, parking, PICU facilities and answers can be found to burning issues such as ‘Can I see my child straight away?’ and ‘Can I touch my child?’
Dr Pathan said: “The next step is to see what parents find helpful and to integrate some personalised support for mental health that they can take into the community to prevent their stress and trauma becoming debilitating.
“By reaching parents early, we hope in the longer term, we will be able reduce dependency on GP and community mental health services by parents going through the trauma of a PICU admission.
My PICU Story
“Though there are some diary apps licensed for use as journal and communication tools in the PICU and NICU setting, ‘My PICU Story’ offers more. It is a scalable, evidence-based community mental health intervention that turns intensive care into a point of prevention, not the start of another illness.”
ACT CEO Shelly Thake said: “Having a really sick child is every parent’s worst nightmare and I know our supporters will be proud that the charity is supporting the development of such a practical source of help.”
My PICU Story it is available for download on Apple and Google play store. You can support ACT at act4addenbrookes.org.uk.