My daughter, Trudy, was born prematurely 13 years ago. Although the first few weeks of her life were an extremely worrying and traumatic time and, of course, every child born to each of us changes our life in some way or other, I don’t think either my wife, Elaine, or I, appreciated just quite what challenges lay ahead for us all in the years to come.
We do not have a diagnosis for Trudy but she is severely brain damaged and, as is fairly commonplace with brain damage, has associated health problems. To try to give you an idea – Trudy suffers with extremely severe epilepsy, her seizures vary from what we call “vacant spells” to full blown tonic clonic fits which have been known to last anything up to 2 hours requiring hospital intervention and resuscitation on numerous occasions. Everywhere Trudy goes so does oxygen and a suction machine, along with very strong emergency drugs. Trudy’s condition is such that the health authority, along with education, agree that she should not be allowed to attend school without her own dedicated nurse to travel to and from school with her and to stay with her throughout the school day.
Trudy has undergone several operations during her comparatively short life-time among which was an operation called a Nissen’s Fundoplication whereby the entrance to her stomach was decreased to prevent reflux – a condition she was suffering with “silently” for some time and so severe it had actually scarred her oesophagus.
She has also had a gastrostomy inserted into her stomach which gives us direct access to give her fluids, drugs and nourishment. Last year she underwent scoliosis surgery and had rods inserted into her back to support her spine which I am very pleased to say was a huge success.
At night time Trudy is connected to a machine which monitors her oxygen levels and heart rate – this will alert us should intervention be required. She also sleeps connected to a machine called “CPAP” (continuous positive air pressure) this is because when she sleeps her breathing can become obstructed, possibly due to her lower than average muscle tone. She is also fed overnight directly into her stomach as her voluntary intake is not adequate.
Trudy has no communication skills and relies on us for all her everyday needs. She cannot stand or walk, is doubly incontinent, cannot feed herself – in fact, her skills are probably on a par with a baby of about 4 months old.
But, just like a 4 month old baby, she is absolutely gorgeous!! She does know her name and always has a beautiful smile and eye contact for everyone. We wouldn’t swap her for the world – only her disabilities and ill health.
EACH (East Anglia’s Children’s Hospices) at Milton in Cambridge came into our lives when Trudy was about 2 years old after a particularly lengthy and traumatic time in Great Ormond Street Hospital. I can’t even begin to explain what a life line they have been for us.
Trudy has been allocated approximately 25 nights stay at the Hospice per year or, if we prefer, we can ask the Hospice to help us in the home. Whenever Trudy stays at the Hospice we know we can leave her there in the very homely, clean, comfortable surroundings safe in the knowledge that she will be cared for to the highest degree by the very dedicated, sensitive, even affectionate, staff right from the top notch nurses to the kitchen staff to the volunteers to the cleaners! They are all a great bunch of people totally dedicated to the children and their families.
We also know that not only will Trudy’s everyday basic and health needs be met at the Hospice but that she will also have an enjoyable time from swimming in the hydrotherapy pool, visiting the sensory room, experiencing music therapy to watching TV with the other kids and getting stuck in with the play specialist creating some imaginative painting or similar for Mum and Dad to stick on the wall back home.
Without the Hospice my wife and I would never get a break from the ‘round the clock’ care Trudy requires. These breaks not only enable us to recharge our batteries but also give us the opportunity to do some of the ‘ordinary’ things that normally elude us and our young son, Mitchell, who arrived safely and without problems, 8 years ago.
Simple fun things like going for a walk in a field (try doing that with a wheelchair!), bike riding, visiting the cinema, holding hands, dedicating quality time to each other…..the list is endless……are just not possible as a family. Let alone redecorating or sleeping for example!
13 years down the line we still can’t be “spontaneous” and any plans we do make are frequently cancelled due to seizures/ill-health. Anyone who’s ever had a baby knows what it’s like…..military precision just to get out the front door……feeds, bottles, wipes, nappies, equipment….we’re still at that stage and probably always will be but we now have the added things to think about as well….drugs, oxygen, batteries charged on equipment, is where we intend to go wheelchair friendly…..will we be able to get the wheelchair into friends’ houses and, if the weather is bad will we leave wheel marks on their carpets?!!
Our immediate family is such that we do not have anyone we can call on to help out – our life line is the Hospice. They have come to the rescue on numerous occasions – like when we moved house (the completion date and everyone in the buying/selling line had to revolve around Trudy and when the Hospice could accommodate her!) and when Mitchell was born I could not have been at his birth if a member of the Hospice team had not stepped in to care for Trudy - to name just two examples!!
Although we as a family tend to use the Hospice purely for respite care we know we only have to pick up the telephone to them and they are there willing and very able to not only offer support and practical advice but also they have a whole range of expertise and services on offer right through to bereavement and support for siblings.
Children’s Hospices receive absolutely minimal Government funding – and even that is not guaranteed. The Hospice survives for families like ours by fund raising and kind-hearted people digging deep into their pockets. Every year they need to raise at least £4.9 million only 21% is funded jointly by the Government and the National Health Service.
Having said that, it’s not just the Hospice that needs your help to enable it to continue offering its services, after all, if the money runs out they can “shut up shop”– WE and all the other families, past, present and future, NEED YOUR HELP to keep our family units together enabling us to carry on looking after our much loved children in their own homes with the help of the Hospice.
It is fantastic that medical science has come a long way and many of these children may not have survived had they been born years earlier but unfortunately no-one’s thought about the future respite/funding etc these children, who will probably become adults, need NOW.
All the other innocent ‘Trudys’ and their families need the public’s help to sustain some sort of normality and quality of life. Disability, like an illness, is not something any one of us chooses, neither is it normally self-inflicted/any one’s fault, and all the money in the world wouldn’t put it right but some of the money in the world would help to make lives easier. Living with a disability renders the whole family “disabled”.
Sympathetic noises and looks are all very well - it’s practical help we need and, unfortunately, that costs money….lots of money.
This is why I, along with some very good, close, supportive friends, are organising a fund raising golf day on
12 July 2008 – it would be my small way of saying thank you to the Hospice for all the support they have shown me and my family. We have previously held two similar golf days which were extremely successful but we hope to do even better this time!
If you can support us in any way at all that would be fantastic. If you’re a golfer perhaps you would like to put a
team forward, maybe you’d like to sponsor a hole, or maybe you feel you could donate a raffle prize or an item we could auction.
ANYTHING you are able to do to help would be warmly and extremely gratefully received by the Hospice and me, Elaine, Trudy and Mitchell thank you from the bottom of our hearts.
If you would like to know more about the Hospice and the work they do have their own website at
www.each.org.uk and, while you’re there, you could sneak a peek at Trudy and Mitchell!! You need to click on “Care at EACH” and then “Family Support” - Mitch and Trudy are the children in the top photograph (Mitchell looks terrified but he is actually playing with an elastic band!!).
I thank you most sincerely for reading my family’s story.
By Colin Oatley
