Friday, 15 February 2013

What if I had a Child with CF?

"The only source of knowledge is experience"
 ~ Albert Einstein ~

Baby Charles

A question that often gets asked of me is "what would you have done if you had had a child with CF?". Fair question! Yes, I had a very clear plan in place if one of our children were diagnosed with CF. None of them have CF, but I will break down my own approach for you to look at.

First of all, you can interpret my having children anyway you like, but one things for sure, it's a testimony to the fact that I truly believe I have had a good life! I was not afraid to have children or for my children because from my experience life is still good, with or with out CF. We have never had gene/carrier testing done for Ben and the first 3 pregnancies were managed at a non-CF country hospital. It was as normal as could be! I was treated like any other expectant mother, mid-wives delivered them and it all went smoothly, my labours all averaged 45 minutes of intense labour. No CF problems at all, I never did lung function during the pregnancies, but was very comfortable with a check up and going by my own instincts. I never needed oxygen or wheel chairs, only in the last few months I slept on two pillows because of acid reflux (which I've read is a common problem for a lot of expectant ladies, CF or not) With my fourth baby; (after attempting to turn him 3 times) he was breech, we decided to have the pregnancy managed at the bigger hospital where my CF is also managed from, just in case I needed a c-section. Thank goodness I didn't need one and thank goodness for epidurals! Was the best delivery EVER!! Again it all went very very well (better than expected actually considering I had fractured a rib in a previous accident). I guess what I'm trying to say is I don't fear a whole lot about CF because I have experienced a whole lot! I am very comfortable in my own body and pretty good at knowing my limits.

What would I do? I would treat an unwell child very similar to the way I have my well sons. I feed them healthy choices and create good habits for life. I breast fed for as long as I could manage, one year with my first baby then got less with each one. I found an Organic Formula, as healthy as I could find at the time. Don't get me started on how bad some formula's are out there, similar to sustagen type drinks, loaded with too many bad ingredients. Some are just not healthy for a tiny baby, well or not! I did feel badly about this, but breast feeding long term took it out of me, I felt instantly better once I stoped feeding. I alternated the formula with freshly juiced carrots and apples.

"One should eat to live, not live to eat" ~ Moliere ~

Once solids start, that's when the real work begins. This would be a crucial part of my management of any child of mine with CF. I view what I eat as important as medicine. This is the foundation of your body, your cells your life! If you eat highly processed, preserved, packaged, flavoured, fried, lifeless "food", what do you expect? With CF our digestion is impaired, so eating all the recommend high fat, protein, sugar and refined carbohydrates is lethal to be honest. That's why they prescribe tones of enzymes, to digest the indigestible! We are not machines that need petrol, we have living bodies that only survive with living foods. I am not surprised by the high percentage CF patients developing diabetes, cancer & no natural enzyme function left (to name a few). With all the drugs, coupled with a the "CF diet", there can be no other long term outcome.

What would I feed a CF Child of mine? Fresh live nutrient rich foods; vegetables, fruit, wholefoods, whole organic dairy and meats. Fresh juices!! Zero junk food or rubbish drinks. It's not a treat to give a sick child bad food! They may feel emotionally warm and fuzzy at the time, but their body won't feel that way in the long run. Don't fall into the mistake of just thinking "oh that's the CF causing ALL the problems". It does matter what you eat!! It does make a difference!! What I eat makes or breaks me, I have experienced this first hand. I rebelled, I ate average CF diet in my early/mid teens. Whenever I err from a really good diet (i.e. Christmas) I become unwell not too long after (hence my recent down turn, I over did foods that are not on my regular diet. Too much sugar and refined foods). Sometimes it's permissible, if you bounce back, but (particularly as you get older) it can cause a lot of trouble, like when I got really ill at 15 when I was recommend to have a heart, liver, double lung transplant. Scared me straight! I turned my life around and rebuilt my body piece by piece. With nutrition and detoxing.

Me aged 18, after doing natural therapies full time for two years

This has been my journey, my experience. This is not suggesting I have no CF problems by eating a diet like this, but that by eating better the quality of life my life is improved on massively. I still have antibiotics and need medical assistance more than a healthy person, but I aim to keep it too a minimum. My only regret in life was that I stupidly dropped my bundle (health) in my teens, if I had stayed on the diet/lifestyle I had as a child, I would have prevented a lot of the lung damage I sustain today. I stayed out of hospital as a child for 13 years on a healthy diet coupled with an active lifestyle. Don't discount the power you have to make a better life for yourself. Having CF is a challenge, we must rise to meet it, sometimes it seems to require more than we think we have to give, but you'll be surprised how much untapped capacity you have to fight back... food for thought. 

Next time I will go through the different basic natural supplements that have helped me as a child that I would have used if any of my children had CF. 

I hold the same opinion about the CF/Hospital diet as Mr Jamie Oliver does about Britain's school dinners, for work which he was awarded an OBE by HM The Queen. The hospital food system needs to be revolutionised!! I strongly believe hospital dietitians across the board need to re look at what they are suggesting to parents and patients alike.

Our Children Deserve Better!!! 


1 comment:

  1. Hi there, I found your blog while searching for ways to get my CF toddler to eat. It is really heartening to know that I am not the only one going through this. That it is normal. I try not to give him the junk and shlep the doctors and nutritionist recommend he get (because they are high in calories). I don't like giving it to him because it's just junk. It serves no purpose other then to fill him up with bad calories. As his mother, I don't like it. It's been very discouraging as he won't eat -anything- lately. But finding your article gives me hope that it will end. That he will change his mind about food. We just have to keep trying. Thank you so much for posting it. It's helpful to see what it's like from the other side of the disease. Blessings to you and your family!