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Naidex 2008

2008-05-09T06:13:00.000-07:00

My friend and I both decided to visit Naidex 2008, exhibition for disability, at Birmingham NEC. Once registered with Naidex, they send you a name badge pass. We are both wheelchair users and live in London. So our first task was to plan our journey from London to Birmingham, using accessible busses and trains. From using the National rail website we discovered our route would be from London Euston to Birmingham International Station on a Virgin train, both wheelchair accessible stations. And Birmingham International Station is connected to NEC via lifts and link tunnels. A few days before going to Naidex, we telephoned Virgin Journey Care to book our tickets and train assistance. Train assistance enables wheelchair users to board trains using a portable ramp. Train staff position a ramp against train and assist you.

On entering Naidex we planned to follow a well thought out route to see each stand. But, as is usually the case, there was so much to view, our strategy was forgotten. I was particularly eager to see a feature showing a Future Lifestyle Home, using assistive technology. Entering the house through a garden, assistance garden tools were on display from Peta uk. Peta uk, not only sell garden tools, but kitchen tools and other small gadgets.

The street door was an automated door system. Automated door systems, uses the very latest in access control technology. Only one click on a remote control button, opens the door, and can be worn as wrist strap, neck strap or operated using a key fob. A Phone entry system, can be a wall phone, video phone or remote phone deck.

The first room is the Kitchen installed by Design Matters. One innovative appliance is the Bosch Oven with a side hung door and telescopic shelves that lock and don’t tip. Incorporated underneath the oven is a heat resistant pull-out shelf, which I thought was very useful if you need to check or turn food during cooking. There was several appliances including, a compact dishwasher which fitted under a low work top. The sink was fitted with a steaming hot water filtered kitchen tap, eliminating the need to use a kettle.

To reach into cupboards, there was a magic corner system. Essentially for corner based cupboards, non slip shelves attached to a door come out when cupboard is opened. No more bending and stretching! Homecraft and Really useful things, are both suppliers of helpful gadgets for around the home.

In the living room you can control a lot of electrical products. Pre-programmed, by Possum uk Possum uk, touch screens can operate various things in the home, increasing independence with advanced technology. The Possum Primo, is affordable, lightweight and robust in design. The Primo can hold up to 140 infrared codes with multiple menus for controlling a domestic environment. If you require a workspace in your home for a computer etc, QED retails an adjustable table. It has a split level surface, good for supporting books, magazines and lightweight devices.

In the bathroom, on show was a new design shower cubicle from Impey. Also in the shower cubicle, was a Triton body dryer keeping whole area nice and warm. The hand basin was height adjustable, cleverly designed to provide arm support. The Balena 8000 toilet was a state-of-the-art remote controlled bidet, with individual adjustable washing and drying functions. In the Luna Bath is an Archimedes Bath lift, giving maximum support and comfort while bathing. Alternatively, a traversing overhead tracking
hoist system from Liko is shown for transferring safely into a bath and on/off the toilet.

There was a huge amount of stands with latest models of all types of wheelchairs. Cyclone Mobility showcased an affordable lightweight wheelchair, called Alpha. PDG Mobility are a 2008 winner of the Medical Design Excellence Award. PDG Mobility specialise in tilt-in space wheelchairs. They were exhibiting as well as introducing the new Fuze T50 wheelchair. PDG Mobility are a Canadian company.

The New Product Showcase stand, presented and demonstrated the latest new products. From pressure chairs, bathing chairs, and children’s trikes. There was something for everyone to see and try.

The highlight of my day, was watching a demonstration by Canine Partners. Canine Partners, launched in 1991, is an assistance dog charity. Dogs are trained to enrich the lives of physically disabled people, by helping with every day tasks. At Naidex, three Labrador Retrievers demonstrated what they are trained to do. During the demonstration, each dog opened a washing machine and remove washed clothes, opened and closed a cupboard, tugged a sleeve to remove a coat from a person sitting in wheelchair, place a purse on a counter for a cashier to take money in a shop and pick up dropped items. All the dogs were very happy, as they regard their work as fun and games. This charity receives no government funding for their much needed work, so relies on donations and fundraising events.

My second scan

2008-05-02T08:28:00.001-07:00

A second scan was scheduled in four weeks time. By this time I was presumed to be nearly 8 or 9 weeks pregnant. On arrival at the hospital, I was a bit excited to find out how the twins where doing, as by this time I was getting used to the idea of being pregnant, even looking at baby clothes in shops, friends and people who knew, wished me well. My mind was going over and over the prospect of having twins. And I hoped my disability would not interfere to much with my pregnancy.

As my second ultrasound scan got underway, I noticed my obstetrician was really concentrating on the images showing on a monitor. She was moving the scan probe all over my tummy with a curious expression on her face. I begun to feel nervous and uneasy, thinking something terrible was wrong. When I am nervous, I begin to have a lot of involuntary shaky movements. I asked if anything was wrong, and was finally told that I was expecting Triplets. One Embryo had been hiding behind the other two. This was yet another bombshell which shocked me to the core. My obstetrician now voiced major concerns about me carrying triplets. She informed me I would need to be referred to a Professor of Foetal Medicine, for examination to see what his medical opinion was. She discussed with me, that he may advise me to reduce the pregnancy by removing an embryo, leaving two remaining. Taking in all this new information was almost impossible. Physically I was experiencing an increase in shaky movements, the more I tried to relax, the more tense I became in every muscle. Mentally, I was fearing my tension spasms would harm my babies, and for the first time, began to have feelings of not being quite in control with what was happening to me.

My appointment to see the professor was arranged very quickly, the very next day in fact. Upon meeting him for the first time, he came across very friendly and down to earth. But I felt very nervous and worried. The Professor was well known in his profession, as he was involved in the pioneering of operating on a foetus while still in the womb. I was examined by the Professor and a couple of his colleagues. They spent some time studying ultrasound images. I was becoming increasingly anxious. The Professor, approached the bed where I was laying, with a serious look on his face. He spoke in a matter-of-fact manner, telling me I would not be able to carry three babies. He said, the space between my pelvis and breast bone was very small, and if I carried all three babies, they would be born dead or disabled, and my heart and lungs could be pushed out of place as the pregnancy progressed. At this point I was feeling devastated, and crying uncontrollably. My involuntary movements went from moderate to severe. The Professor's face, took on an expression of contempt an disdain. With me feeling and looking wretched, he announced it may be best to terminate the entire triplet pregnancy altogether. Hearing this, I voiced that I must try to at least carry one baby. He then asked each person in the room their opinion. Everyone present adhered to the Professor's evaluation of the situation, except my obstetrician. My obstetrician, god bless her, said 'woman with Cerebral Palsy are known to have babies'. It was then decided I would undergo an embryo reduction procedure to reduce the pregnancy from three to one.

The terminations would be carried out early the next morning. On the way home in the car, I felt very alone and isolated, as on top of everything, my relationship with my boyfriend had broken down. No-one had asked me, what I thought about the terminations, how I was feeling or anything. As soon as I got home, I felt terrible, trapped in something out of my control. The discussion at hospital had been in the context, here is a woman with CP presenting a triplet pregnancy, deal with it quickly. No debate on any other course of action. There was also never any mention of how I was feeling emotionally or otherwise. I had always been against abortion, yet here was I, bereaved at the thought of having two babies killed. In utter desperation, I telephoned the College of obstructions and asked if there was an obstetrician anywhere in the UK who specialised in pregnancy and disabled woman. I was urgently seeking a second opinion. There is not one Obstetrician in the UK who has extensive knowledge on disability and pregnancy.

Embryo reduction, is a procedure first used when IVF treatment produces multiple pregnancies. The procedure is performed by holding an ultrasound transducer on the patients belly; injecting a needle and manoeuvring it into a position near the fatal heart; and drawing out the metal rod at the core of the needle and replacing it with the vial of potassium chloride that stops the fatal heart. The dead foetuses gradually dissolve and reabsorb into the bloodstream over a three month or so period.

The next morning I felt completely empty and saddened by what was going to happen. On arrival at the hospital I was shown into a medical room where nurses were busy making preparations. As I was helped onto the bed, my legs felt like jelly. Not much was said either. The Professor entered the room with an air of arrogance. During the procedure I felt pain. I was also shaking quite a bit, which the Professor frowned upon and almost lost his patience with me. I caught a glimpse of the monitor and saw the needle inject the babies hearts causing them to stop beating. My heart sank further. When it was all over, the Professor stood up, and said 'two dead, one alive', and left the room. Another sad car journey home, two babies less and the remaining one under threatened miscarriage.

The remaining embryo was the largest of the triplets, so had a good chance of survival. A couple of weeks after the two terminations, I began to feel a bit calmer about the baby I was carrying. Reaching the first trimester (3 month period), was a milestone for me. I was now three months pregnant, and felt quite well. I looked forward to my ante-natal appointments, to see how the baby was progressing. My obstetrician always assured me everything was going well. I was scanned more frequently than usual, as they had to check the other two embryos were dissolving. It was so comforting seeing the baby growing inside me. During scans, measurements were taken, which showed my baby was developing normally.

My first scan

2008-05-02T08:26:00.000-07:00

A few days after doing pregnancy test, I telephoned a good friend of mine. After some discussion, we decided to get the pregnancy confirmed at a Family Planning Clinic attached to a local hospital. We went along one evening with a urine sample, and sure enough I was pregnant. I was then referred to an Obstetrician at the attached hospital. My first appointment was to meet the Obstetrician, and have my first scan. The Obstetrician scanned my tummy for a few minutes, then announced I was expecting twins. To say I was shocked, is an understatement, I was absolutely speechless. For a first spontaneous pregnancy to be twins, is unbelievable when your first told. The Obstetrician was astonished herself, but to my surprise was open minded about the situation. She mentioned in order for me to carry twins, I would probably spend most of the pregnancy in hospital for close monitoring. I was fully prepared to do what was best.

My own personal experience of Pregnancy

2008-05-02T08:24:00.000-07:00

In January 1994, I suspected I may be pregnant. My menstrual cycle had always been very regular, so when my expected period failed to start after a few days, I knew something major was going on. I decided to purchase a home pregnancy kit to confirm my suspicions. After reading the home kit instructions, I did the test. It instructed to wait 60 seconds before checking test results, I waited 30 seconds, as the suspense was overwhelming. A clear blue line was visible. I was certainly pregnant.

The thought of being pregnant sent my head spinning. I had a joyous rosy image of myself, being the proud mum of a beautiful bouncing baby, looking very happy without a care in the world. Then it suddenly dawned on me, I was pregnant, I was disabled with Cerebral Palsy, I couldn’t walk, I can be unsteady, I was in a wheelchair. Before finding out I was pregnant, I had always managed to do most things in my own way, despite my disability. Nothing bothered me, I just carried out tasks without thinking. But, a tiny Baby! Reliant on me to provide it’s every need. This was most certainly unknown territory to me,where my disability was concerned. My mind kept on going from immense elation to a feeling of despair, and visa versa.

I had disabled friends who had children, but their disability was different to mine. Even those I knew with CP, the level of how their CP affected them was not the same as mine. At the back of mind I imagined myself handling a baby pretty well, in a manner that suited me in my own home. But, at the forefront of my mind was a daunting road ahead. I had to get through the next nine months of pregnancy first.

Pregnancy and Cerebral Palsy

2008-04-15T06:00:00.000-07:00

Because Cerebral Palsy is congenital, it is not a disease, and never contagious so can not be passed on. There is no evidence to suggest that Cerebral Palsy affects fertility. Therefore, there should be no reason why women with Cerebral Palsy should not consider having children, apart from individual concerns. Some pregnant women, with CP experience temporary changes to their disability during pregnancy, such as an increase in their spasms. If carrying to full term becomes difficult, an orthopedic specialist may be worth consulting.

Ante-natal care

Whether your routine ante-natal care takes place at a hospital or doctor's surgery, to accommodate any physical needs regarding your Cerebral Palsy, you may have to check access and if the examination bed is height adjustable. A community midwife may also be able to visit you at home. If your physically impairments make examinations feel uncomfortable, discuss using a different positions which may make medical procedures easier.

During Pregnancy

Every woman’s experience of pregnancy is different. There are so many changes going on inside the body while carrying a baby. From morning sickness and constipation, to the stretching of ligaments, which can be painful. You may find you need to enlist a support person when pregnant, if morning sickness is severe, or tiredness occurs in late pregnancy, making normal tasks more strenuous. In late pregnancy, if there is a need to rest more and more, a recliner may seem most comfortable, rather than a bed.

Caution must given if you take drugs for Cerebral Palsy, or Epilepsy, as certain medications may effect foetal development, and should always be discussed with an obstetrician or your GP.

Preparing for the Birth

Preparing for the birth is inevitable, and will need as much detail as possible. As with the majority of births, the order of things can go into disarray. Keep an open mind, as the best laid plans may have to be abandoned due to unexpected changes. Mum, knows best, and with plenty of discussion and support, things should go smoothly. We would all like to be able to give birth naturally, but it may not always be possible. A Cesarean section can be performed for many reasons, and is an assured option of a safe delivery.

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Disability, Pregnancy & Parenthood international

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