BiographyMaria was born a few weeks early and even though she was born very petite I was told she was fine and healthy. A few hours into the world I noticed something wasn't right as Maria had not once opened her eyes or fed and was just floppy. Before I could make sense of everything Maria was suddenly in intensive care covered with tapes and wires all over, no one was saying anything and I wasn't allowed to hold her. I was then told that she had had a cardiac arrest due to very weak lungs and was unable to breathe without the help of oxygen.
As to what was wrong with her was still unknown, different doctors kept coming in and out, doing endless number of tests. And it wasn't till they did the X-ray for her lungs, they realised Maria was born with something called situs invursus, dextra cardia with all her organs. This means all her organs are not just on the opposite side but also facing back to front. So this meant Maria had to stay in hospital, a few more weeks longer, and wasn't strong enough to feed like other babies. Maria was NGtube fed for a while.
Coming home finally Maria was still not managing her feeds orally without bringing it all up or aspirating and gagging finding it hard to breathe, which meant more visits to A&E every other week and different hospitals for different problems. By the time Maria was 3months I was told she couldn't be breastfed any more as she was suffering from yet another problem which was causing her aspirating and gagging every meal time, which was unsafe. This was delayed swallow, which meant Maria had to start having a fluid thickener with all her liquids.
Maria is now 8yrs but almost 9. She still has to have the liquid thickener with all her liquids, be it water, juice, soup, otherwise the gagging and aspirating will lead to the liquid going into her lungs, and would need to get it pumped out, it's like drowning in her own liquid intake, so wherever Maria goes she must make sure to not just have her inhalers for her asthma but also the liquid thickener.
Over the years Maria have had a few surgeries and biopsies done to try make her lungs better and stronger because of her constant pneumonia and bronchitis infection. To make sure she stays as healthy as possible, Maria has to be admitted to her specialist hospital every 3month for intravenous antibiotics to help her lungs work better. Because of this Maria developed a phobia of all doctors and nurses and hospitals and especially needles. That's when the doctors and I decided it was best that Maria have surgery for a ports have, this was done in August2014. Due to her being lactose intolerance and not being able to grow - Maria is below average within her weight - so in 2014 December Maria had surgery to be fitted with a gastronomer feeding peg, which she uses everyday.
Maria has to have physio 2x a day to help me clear her chest and lungs, and also use a nebuliser twice a day, her physio at school does it on weekdays in the mornings before Maria starts classes and when Maria gets home before bed she has her 2nd set of nebuliser and physio.
However we are hopeful things will get better and Maria won't let all this stop her from having and living a normal life. I always tell her that she should always make sure she smiles because the more she smiles, the healthier and stronger she will always be.
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