A Parent’s Perspective

11 June 2014

Christine Anderson is mother to 11-year old twins Christopher and Jessica. Christopher has spina bifida, hydrocephalus and obstructive sleep apnoea.

As the co-author of a paper on how we experience space and place in health and illness where there is a child with complex health needs, she shares her thoughts about the range of equipment and adaptations used by Christopher and the effect it's had on her family and their lives.

As babies my twins had very different experiences from the time they were born at 35 weeks. I remember taking Jess’s Moses basket to Alder Hey for our first visit at 10 days old, desperate to put the twins back together. I will never forget the massive sigh and relief that came over Christopher as we placed him next to her out of the plastic incubator. I had no idea that this equipment would very soon creep its way into our home.

In baskets they’re twins and it allowed time to forget his needs and the trauma we had all been through.

A meshed bath seat was a suggestion from local OT to help his back heal following surgery. We used to hide it, when we knew visitors were coming. We didn’t want him to be different or for others to see him as any less than Jessica. We couldn’t handle questions we didn’t have answers to and wanted to focus on baby talk not reliving our nightmare and anxieties.

In essence it doesn’t really work and often it is the hidden discreet adaptations and functions of medical equipment, that enable Christopher and many others to actually sit up and have two hands free to eat and enjoy table top activities, which they wouldn’t otherwise be able to do. It is this magical key and spark that albeit it ugly and unfair brings hope and ability. Basic and yet so enabling.

By the time my twins were 15 weeks old, we’d had 15 outpatient appointments, despite being an inpatient for the first three of those weeks and began to collect 18 healthcare professionals, along with dressings, syringes, galipots, plaster casts, Dennis Browne boots and bar to treat his talipes, corner seats, medication, and prescription milks. We got very good at hiding things under Christopher’s cot and in cupboards. We were soon fighting for space but desperate for it all to go away. We are now experts with Allen keys to keep up with growing monkeys and experts in paediatric equipment and fundraising ideas to ensure he gets the right equipment as he needs it.

Before Christopher was two he was wearing orthotics to encourage him to stand and it was clear that he had learning and memory issues. We were given a walking frame to try and it was clear that he needed a push along that was in front of him. Anything behind, he walked out of and left behind. Walking and thinking/trying to remember were really hard for him to do together. It was so frustrating, knowing we were being given a £1000 frame one of six ordered at the start of the new financial year because they could, when what he needed and we finally got was just £350 and enabled him.

Before he was three, we knew Christopher needed a wheelchair but had no idea we would have to battle to get professionals to recognise the benefits. We were told he needed buggy and set about a journey to enable him. There is such a difference between products and we feel it’s really important people see Christopher not the chair and allow him independent mobility. We work hard to show him his value and encourage him to chase off in a supermarket and grab items off the shelf like any toddler, albeit two years after his twin.

Christopher's situation means he’s paralysed below the knee and now a fulltime wheelchair user around the house and outside; he has a ventriculoperitoneal shunt to regulate the cerebral spinal fluid; and he uses BIPAP ventilation overnight. He also has learning and memory issues.

We still struggle, for something so important to Christopher that really makes the difference between being a cool active kid and slumped, frustrated passenger.

By the time the twins were five we needed more space for the increasing amounts of equipment but also larger pieces needed as he grew. We worked hard to get an extension and access to a bathroom without Christopher needing to be carried. Sadly this meant putting him downstairs away from us and more tussles with people taking over our home, telling us what we can have rather than what we would like.

With a profile bed acquired from a friend and a shower that he refused to use because he got cold and hated the feel. It all looked great but the truth is he wants to come in our room in a morning and have a bath where we do. We have since funded our own bath and bath lift to give him what he needs.

In the paper I co-authored we write, “Not only is the presence of such technology a reminder that one does not have a choice, or fully control their own space, but it reminds them of the fragility of their child’s life.” We don’t want him separated downstairs and actually we need to get to him quickly in the night and be able to hear him. We have no choice. Each bedtime is a stark reminder that people made decisions without us that impact massively on our family, in what should be our home.

In 2010 I realised his sleep was more disturbed and holding him tightly wrapped in duvet was the only way he could drop off and stay asleep. As I lay with him night after night, I knew the pattern of one, two, miss a breath was actually not good. It had always been his pattern in sleep but the gap waiting for the return of number three was prolonged and accompanied by jerks and often woke him during light phases of sleep, making it hard to get into a deep sleep where his breathing was better. Dreading another referral, I ploughed on and October saw the arrival of overnight BIPAP ventilation. A bedside table with a machine and reality that he could not shout us with a face mask on. He now has a doorbell. The box sits with us and by the side of our bed. There’s no hiding the noise of the pump and alarms. I imagine if I had the energy to look into it I’d find a more modern machine with a quieter fan and a stand to attach it to so it doesn’t fall every time he rolls over. For now it works, his quality of life is massively improved and he must feel it because he won’t go to bed without it. We pack it up and where we go it comes too - just a piece of hand luggage.

Collaboration with other services and professionals works for us. I wonder if tertiary centres know they discharge Christopher into nothing, with an ideal that he gets the follow up he needs. Do they know the hours I spend trying to order “consumables”, get a new mask when his snapped, battle to get orthotics and prescribed equipment by experts who know him well but need funding and providing by local Clinical Commissioning Group. Do they know the heart break, that professionals are in arms reach many wanting to help but not allowed to because we have the wrong GP and postcode or they can’t discuss or learn about products unless they are allowed to fund/provide them? The daily reminder that I can’t get him what he needs to make his life easier. And the frustration that Alder Hey do tell me what he needs but I can’t then access it locally.

Our paper concludes that there will always be a tension between medical technology, function and idealistic aesthetic of the family home. My hope is that professionals understand that we our compromising our home already restricted by space and finance, caring 24/7, on a path we never anticipated, often scared and most of all a family who just want to be a family. We do our best to make home time, fun time.

Read Appropriated landscapes: the intrusion of technology and equipment into the homes and lives of families with a child with complex needs, the full paper authored by Andrew J. Moore, Christine Anderson, Bernie Carter, and Jane Coad, which appears in the Journal of Child Health Care.