Conversation as a means of communication has been around for centuries. Strangely enough it poses a main problem for patients and parents of sick children. Explanations should be a routine part of treatment, but unfortunately due to overwork or the inability for some Doctors to relate to Lay-people in a language they can understand, they arent.
As a nurse myself, I know the need to communicate with parents and patients is essential. I have been unfortunate to be on “the other side of the fence”, and its through my experiences of being treated as “only the mother” or “neurotic and over anxious”, I felt the need to write this. Its an attitude that comes across very strongly, causing extreme stress and mental anguish, which can be so easily avoided. Looking back I was amazed that people didnt have the time to consider how I felt or how it was affecting me. The only people who treated me as a person of equal intelligence was the Plunket Nurse and my General Practitioner. Hopefully by relaying my experiences Ive had with my daughter, it will help other mothers to realise that they arent alone.
The feeling of “not knowing” causes stress, more so with a little knowledge. Its just as important to help the mother cope with her anxiety (as any normal mother would feel) as it is to treat the patient. Hopefully this attitude will change soon, but unless mothers make their needs known, then it will remain the same.
Living with chronic illness in the family can be extremely stressful when you are in an adult relationship. Few people have to experience it when they have their children. This is a story about having children with chronic illness and hopefully giving an insight into the special joys of having children who are medically fragile. The tears and heartache you go through as they are growing up is no less because they arent perfect, it just becomes more frequent and starts earlier as they tend to have other associated problems as well as the normal things, like puberty.
There are lots of times I felt I couldnt go on. Then I realised that I had been given a gift of two very special individuals who touched the hearts of all those who came to know them as they went through their challenges of life. It was to be my biggest challenge in my life to help these two kids to get somewhere and to be something.
When one starts on the journey of life you have little thought for where the path is leading you. I firmly believe that our paths are mapped out for us when we are born. I didnt realise it at the time but my aspiration to become a nurse was the starting point for all that has happened to me since I finished my training. I got married and like most people wanted to have children.
That is really where my story starts.
Like everyone else I was really excited about the prospect of parenthood and my dream of a little girl or boy who was healthy along with a roof over my head and food in our stomach was really all that I wanted at that time. Little did I know that that dream was the start of much heartache for both of us.
Both Jennifer and Rebecca were born with a rare syndrome called Townes-Brock syndrome and it is genetic. We didnt get a diagnosis on either of the girls until Jenn was 19 years old and Rebecca was 13yrs old. Their father has the syndrome as well and he also has kidney failure although not from the syndrome. His is from an acquired form from a kidney disease and we were unaware that he had the syndrome when we started our family.
This is the story of Jennifer and the problems she has had during her growth from a baby to a wonderful young adult.
I would like to add here that if I had my life to live over again, I would change nothing as my children and family is the most treasured part of my life and they are truly beautiful people. I could not live without them.
Lets start with my first born, Jennifer. She is a special child with lots of qualities that I dont see in other children. Her sister has similar qualities but they are as different in a lot of ways as they are the same. This is just as well as they have endless disagreements so they need to be different. Anyway getting back to Jennifer…
Why me? Why Jennifer? And even if Id known sooner – would it have made any difference? When she was born I was thrilled to have a daughter who was just as beautiful as we expected. She was sleeping peacefully beside me when they told me of her clubfoot.
“Nothing to worry about”, they said.
That was the beginning of a long struggle – physically for her; for me the mental anguish every mother knows when she finds something is wrong with her child. Treatment started at four days old, her foot strapped and splinted. After three weeks she had put on very little weight and by that time, the Plunket Nurse and I were worried. Could something else be wrong? The G.P found nothing and asked us to come back if she hadnt gained weight in the next week. At least her foot was coming along nicely, so something was going right.
No weight gain, so it was back to the Doctor again at the end of the week. This time, he suggested a second opinion from the hospital. A friendly student Doctor saw her first, then handed her to the paediatrician, who made me feel inadequate. He didnt seem impressed by the symptoms. Deciding to keep her in hospital for observation and a few tests, he simply classed her as “a failure to thrive” – and maybe it was my fault. I went home feeling helpless, lost and so alone.
She was home again in a week: “nothing much wrong with her”, they said. Shed been bottle fed and was making better progress, so no more breast feeding.
It was another two weeks with still little gain in weight, before a blood test showed abnormal results. Back into hospital again. This time their attitude was different. I was vindicated. There was something wrong with my daughter after all – and not with me. But, of course it was nothing very much. She was allergic to a few vitamins, they thought – or it could be her kidneys. Every day they came and took blood or did something to her. An x-ray of the kidneys, showed they hadnt grown since she was born. What else could go wrong?
The Nephrologist was sympathetic and helpful, but the reality didnt hit me until later. My daughter might not survive. If she did, dialysis and kidney transplants could lie ahead of her in adolescence. I was allowed to take her home and when the shock wore off, I was determined she would live.
The next twelve months were no fun at all. The nights and days blended into one – feeding took so long. Between two hourly feeds, hospital visits with her kidneys and foot, endless nappies, visitors, and now a broken marriage to contend with, I wondered if I could keep going. What saved me was continuous support from the Plunket Nurse and G.P, my mother and not least the Karitane Unit, who took Jenny three days a week so I could sleep.
As her first birthday approached, I felt we were over the worst, although as yet she had made no attempt to crawl. The Extra-mural Physiotherapist was called in and we proceeded to teach her. She didnt like the feel of the carpet or the lino – we had to introduce them gradually by rubbing pieces against her feet while I was massaging them. Jenny thought it was great fun being rolled around the floor and went off into great peals of laughter.
On her first birthday she crawled. Great excitement in the house, making up for the continual battle we had fought to make her eat. My husband and I had another try at our marriage. Jenny seemed to be pleased about this. When her Daddy came home from work one night, she stood up and walked to him.
We were beginning to think that she should have been talking fairly well by now, but there was no sign of it. Another three months and the Plunket Nurse referred her to the Speech Therapist. Our next big hurdle began. We had to start from scratch, as though she was six months old, designing pictures books for her and, spending hours making silly noises at her. A stranger walking in might have thought Id “flipped my lid.”
By the time she was three, her kidney failure seemed to have been stabilised, but I had a feeling things were not what they should be. I didnt want to seem neurotic, so pushed these thoughts aside. There was enough to worry about as it was. Her teeth were worn down and abscessed. A dentist friend took her on as a patient and spent hours gaining her confidence and getting her used to having things put in her mouth. Eventually, two top front teeth had to come out. Two other bottom ones followed by themselves.
At three and a half, she was able to start Kindy. There was one just down the road from us and the next six months were relatively peaceful. Apart from speech therapy and the odd virus, life was fine. But that feeling of something wrong still lingered. In spite of a busy Doctor assurance after further Kidney tests that “everything was fine” and he would see me in three weeks, I felt that to wait even longer after four years of strain, was more than I could bear. I knew he had the results and although I felt guilty about it, the need to know was stronger than my reasoning. I rang my G.P and asked if he could possibly find out for me. He was very understanding and called me back with the news.
Jennys Kidneys were still very small and their function only half normal. But they were coping at present and as long as she had no great growth spurts, the next crisis should not arise before puberty.
When I next saw the Doctor in hospital, he was not very pleased that I asked my G.P to ring when he had been so busy. I tried to explain how I had felt and was told I worried too much. I felt angry and hurt. I cared about my child and saw no reason why I should be blamed for this. As her mother, I had a right to know. Some of the pressure was now off me. Jenny was making good progress with her speech and she enjoyed Kindy. Her health had improved and our marriage was fine.
About that time, we shifted to a new home. Jenny didnt seem able to settle into her new Kindy, basically because other children couldnt understand her speech. Her problem was Dyspraxia – an inability to form words correctly. It was suggested I ring the Psychological Service and have Jenny assessed. Our GP arranged an appointment and the result was another worry. Jennys IQ level was assessed at low to average. She should go to a special Unit Kindy where she could get extra help. Apparently, she was not functioning above the level of a three to three and a half year old, and should stay at the Kindy until after she was five. She had been graded as mildly retarded.
Life is funny – I had spent two and half years working as a hostel mother for the Intellectually Handicapped children and the thought never entered my head that our child would have this. I am fairly well adjusted to coping with bad news, but this news really devastated me. On top of everything else, why must she have brain damage? “It could be worse” everyone told me, “shes only a year behind”, but it didnt help to ease the pain and the way you feel at the time.
Jenny has been accepted into the special kindy unit and with the attraction of a large slide she has accepted the Kindy! I suppose well have a few behaviour problems to start with, but obstacles shes already faced mean that people are now aware and willing to help. There will always be problems to overcome, but with Jennys nature and lots of love and security, we believe shell make out as she grows through learning.
Continue reading Jenn’s Story…
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