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“Your child has cystic fibrosis”

In Insight and Experience by LivingNowLeave a Comment

When Lucy was diagnosed with cystic fibrosis, I feared that her childhood would be overshadowed by constant hospitalisation. Now she is an active, healthy five-year-old, thanks to alternative medicine.

When I gave birth to my first child, I found the life-changing circumstances hard to adjust to. I had recently migrated and was living in a new country with no family support, getting used to a new relationship, and I had to leave work – a place where at least I felt some sense of belonging. I had to get used to the physical and emotional demands of being pregnant, giving birth and then motherhood in general. I was frustrated by the fact I had a degree but had not yet established a career, and my chances to do so were diminishing. Motherhood seemed a lonely path, underpaid and under valued.

Five years later, Lucy came along. We had chosen to go ahead with a second child because we had learnt to adapt to life’s challenges, but whatever problems I encountered the first time, nothing would compare to the ordeal we were about to go through.

The birth itself was reasonable. Compared to my previous marathon of 44 hours ending in an emergency Caesarean, 12 hours of labour and a forceps delivery was a dream, (despite the episiotomy), and there was no postnatal depression. But it was after the birth that the problems began. Lucy failed to thrive. Even at four months old she was hardly bigger than her birth weight and we didn’t know why, not until she was finally diagnosed with cystic fibrosis (C.F.) – the western world’s most common and serious genetic disease. We had never even heard of it!

And so began the endless trips to the Royal Children’s Hospital in order to learn about C.F. It was a huge learning curve. We discovered that we were carriers of a recessive gene, (approximately one in every 20 people are), but for the carrier it is not a health problem. However, for every child born to two carriers there is a one in four chance of inheriting C.F. The doctors explained to us how the recessive C.F. gene creates thick, sticky mucus in the body, which impairs the pancreas so that the person cannot digest fats in food without taking digestive enzymes. C.F. also encourages harmful bacteria to colonise their lungs, causing serious lung damage, hospital admissions and an early death. The average life span of a person with C.F. is between 30 and 40 years. Back in the 1950s, the average life span was only about five years, but children can still die of C.F. related causes. Diabetes, kidney problems and osteoporosis are also major problems for those who do survive past their thirties.

Somehow I had to come to terms with the fact that my daughter had an illness that was and still is life threatening, life shortening and, as yet, incurable. My reaction was complex. Some days I experienced an almost Zen-like appreciation for everything I’d ever taken for granted and for the blessing of having given birth to a beautiful baby who would still be able to walk, talk, and think. Things could have always been worse. Other days I felt crushed by the situation – why my daughter, why me? I kept thinking how lucky we were when Thomas was born and how we hadn’t realised it at the time, which made all those other problems I had back then pale into insignificance. “As long as the baby is healthy.” People were always saying that to me when I was pregnant, but I didn’t understand the truth of it until Lucy was diagnosed.

However, I never dared dwell on the grief for long, for fear of being unable to carry on, because ‘carrying on’ was crucial. Once we had learnt all there was to know about C.F. and how to give Lucy her medication and daily physiotherapy, we settled back into our lives and tried to organise ourselves around the demands of a regime that was designed to keep her as well as possible. Lucy had a lot of catching up to do and I was determined to do everything I could to help her.

Fortunately my partner didn’t mind (and still doesn’t) getting up early to do Lucy’s physio before going to work. ‘Tapping’ her chest, back and sides clears away the mucus and takes about 25 minutes a day and is done twice if she has a cold. When she got older we discovered having an older, sometimes boisterous brother was an advantage because vigorous exercise does much the same as physio. Rough play, pillow bashing and trampolining on the pull-out divan have always been encouraged.

Dealing with Lucy’s digestion was, (and still is), the most difficult aspect of her illness to deal with as good nutrition is vital in order to boost her immune system and avoid colds. In the beginning, estimating the amount of capsules (‘caps’) she needed per grams of fat was extremely difficult. The doctor couldn’t tell me, as each child is different. It was only by observing Lucy’s stools that I worked out that she needs approximately one cap (of pancrease) in order to digest 3 to 5 grams of fat. If her poos were smelly, floated to the top and she didn’t put on weight, I knew she was not getting enough enzymes as fat deposits were remaining in her stools. (I still have to review the situation from time to time.)

At first I found the responsibility to give her exactly the right quantity of enzymes very stressful. I didn’t know what I know now: that she still thrives even if I guess incorrectly. Since then I have developed a more intuitive approach, but at the time I thought it was a matter of life or death.

Recently when a friend of mine looked after Lucy and I had to explain how many caps of digestive enzymes she would need, which is never easy. I realised just how much I have stopped worrying over every gram of fat. Even when you understand how the caps work, it is still difficult to judge the amount of fat there is per food item. Packaged food helps in this respect because the fat content is already calculated and written clearly on the packet, however most healthy food does not come in packages. As my friend went to find her calculator, she turned to me and said: “No wonder we haven’t seen much of you in the last five years. I’m surprised you didn’t have a nervous breakdown”. I didn’t mention that as a baby Lucy also had reflux, which made it even harder as I never knew how many caps she was getting in the end.

Mealtimes are still difficult. They take a good half-hour, sometimes more, as Lucy is a very slow eater and never really hungry. People with C.F. have trouble putting on weight, even with the caps, and are usually slightly built. Lucy is also short and although I have discovered that despite my efforts she does not grow much bigger than what must be her natural size, I cannot resist trying to fatten her up at every opportunity. Since she was a baby I have supplemented her diet with teaspoons of olive and flaxseed oil in order to steer clear of having to provide extra calories in the form of junk food, which was something the hospital recommended. (The idea is that because they have trouble digesting fats, they actually need more.)

Another difficulty I encountered was whether or not to follow the hospital protocol on antibiotics. According to the doctors, Lucy is at risk every time she gets an ordinary cold because viruses thicken her phlegm and increases the chances of developing a more serious infection. Therefore I am supposed to give her antibiotics every time she has a cold. But I felt taking such large amounts of antibiotics is in itself a problem. As I was already familiar with alternative medicine and had found a natural therapist to work with. I decided to use Echinacea, colloidal silver and homeopathics instead. In five years, Lucy has only had about three courses of antibiotics and no hospital admissions. Antibiotics were used on these occasions because alternative medicine was not proving sufficient. We called it ‘getting out the big guns’ and they always helped in the end. Lucy is rarely sick, probably because we give her extra vitamins and herbs all year round. At first, I wasn’t absolutely sure I was doing the right thing, but seeing good results over the years means that I no longer have any doubt. And I have met little opposition from the doctors because Lucy is doing so well.

Unfortunately the cost of vitamins, minerals, herbs, protein powder, replacement salts, and homoeopathic remedies is high but because we believe the healthier we can keep Lucy now, the better her chance of living longer, we are willing to pay the price. And it doesn’t end there. Lucy also inhales anti-oxidants (G.S.H.) in saline water with a nebuliser pump in an extra effort to protect her lungs against infections. The treatment is expensive, only available from America, and has yet to be clinically proven but when your child has C.F. you are willing to try anything. Generous grandparents pay for the treatment.

Looking back, I realise that those early years were particularly difficult not just because I had to cope with so many demands, but because I was afraid Lucy’s childhood would be stolen by hospital stays and ill-health. However after five years that fear has diminished. Apart from being small, Lucy is a normal kid who loves dolls, dressing up, fairy tales and going to birthday parties. She also loves pestering her parents and fighting with her brother. This year she started school and has not yet had a sick day. And apart from all these time-consuming therapies, life goes on pretty much the same as in any other household, but the day usually starts early, as there’s a lot to fit in before school and again when she comes home.

In those first few years I was quick to tell other parents that Lucy had C.F. and that only 50% of suffers make it to 30. I wanted to tell them the facts so they could realise how lucky they were and, I admit, to gain their sympathy. Now I rarely talk about these things and I would never put a time-line on Lucy’s life but neither would I deny the fact that she has a very serious illness. I only mention C.F. if I have to, and only in concrete terms, for example, where food is concerned. Maybe I had to talk so much about C.F. in the beginning in order to deal with it, maybe I had to get it out of my system but now I can see how well she is doing, I can afford to relax and be optimistic.

When Lucy was first diagnosed, people were always trying to persuade me to look on the bright side. I know they meant well but I resented it at the time. I particularly felt hurt by comments such as: “well, nobody knows how long they’ll live”, because I wanted them to recognise my suffering, not have it brushed off so quickly and patched up with band-aids. I wanted to reply: “But Lucy struggles with the basics of life and has her life held in question right from the start – try living with that!” Now I realise looking on the bright side is important. Paradoxically I am saying the same platitudes to myself, five years later, but at the time of diagnosis I yearned for just one person to say: “I feel for you. It must be difficult”. I feel we must be careful how we say such things to people who are suffering because it can be interpreted as uncaring and insensitive.

Although I am grateful for the improvements made in medical science, and especially for alternative medicine, (and all the natural practitioners we have worked with), as conventional medicine doesn’t hold all the answers, living with cystic fibrosis is like living under a large, grey, thin cloud. It doesn’t block out the sun entirely but it does stop its full power from shining through. I can never fully relax, for although Lucy is doing well, I never know what’s around the corner. But C.F. teaches me that I can still choose to be happy despite the cloud. The sun is till there. It’s not as dark as I thought it would be – sometimes it’s hardly dark at all. C.F. teaches me to enjoy the moment, because that’s all any of us really has. It helps me avoid feeling dissatisfied or irritable, for when I look at my daughter I am given the opportunity to remember that life is a gift, no matter how short, and not to be taken for granted.

 

Angela Quarrington is a freelance writer based in Melbourne.

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