Ella was born on the evening of 18th February 2009. At the time we were discharged from the hospital, twenty-four hours later, she had only taken a couple of ounces of milk. The midwives re-assured us that some babies are slow to feed and that she will be fine.
The next few months proved very difficult because she would only ever manage 1/2 to 1 ounce at any time. This was exhausting for us as we’d have to feed her every hour throughout the day and night. Our GP prescribed Lactose-Free milk (as our other two children were lactose intolerant from birth), but this didn’t have much effect. She was then referred to a Paediatrician who prescribed anti-reflux medication, but this didn’t seem to improve her at all.
At 5 months old we started to wean Ella in the hope that this would be more satisfying for her. This is when things turned from bad to worse. She would eat pureed food but then constantly cry/scream and arch like she was uncomfortable and in pain and stiffen all day and night. Nothing would calm her. We would sit up with her most nights trying to comfort her. It was utterly exhausting, even when she was asleep she would be very fidgety and whimper in pain.
We became aware that most things that Ella ate would pass through her exactly as it had gone in, it hadn’ t broken down or digested, and her tummy would look distended. She would also have diarrhoea one minute and become extremely constipated the next.
After 2 weeks we stopped the food and went back to giving her just milk and her symptoms improved although she was still only managing minimal amounts of feed at any time.
The paediatrician then referred Ella to Consultant Paediatric Gastroenterologist Dr Nigel Meadows who arranged for some tests to be carried out. These tests included an impedance study, brain scan (MRI), manometary, endoscopy, colonoscopy, ‘Mechel’ scan, barium swallow and an ultrasound. The impedance study showed that she had severe volume reflux, this is where the contents of her stomach was moving up and down her oesophagus because her stomach wasn’t emptying and as a result everything was being forced upwards.
All of the other tests showed that there was no physical obstruction in her digestive tract and she was diagnosed with severe dysmotility throughout her whole digestive system. This means that her muscles and nerves are not working as they should, and not pushing the food along and so it was sitting for hours/days in her digestive system fermenting and causing a build up of bacterial overgrowth and gas. This was making her tummy distended and causing her pain.
Dr Meadows referred Ella to the feeding clinic at The Royal London Hospital and it was suggested that we try an elimination diet. She was taken off milk and egg products and was prescribed a liquid feed made up of a pre-digested formula which her body should find easier to cope with and she did cope better with this new feed but anytime we tried to introduce food the crying, arching and stiffening would happen again.
Ella began to associate food with pain and didn’t want to eat. She was prescribed antibiotics on a two week on two week off basis to try to combat the bacterial overgrowth caused by the food sitting for long periods in her digestive system. She was also prescribed medication to help with stomach emptying, these did help.
By Christmas 2010 the hourly feeding had taken its toll on us as she was feeding hourly throughout the day and night, so Dr Meadows suggested that a ‘PEG’ feeding tube may be the way forward for Ella, as this could be used to not only feed Ella slower over a longer period so as her body could cope better, but also to alleviate the distension by opening the tube and relieving the build up of gas in her stomach.
She was admitted to hospital at the beginning of February 2011 for a 2 week trial of Nasogastric feeding to make sure that her body could cope with tube feeding before going ahead with a more permanent feeding tube in her stomach. She coped well and so after two weeks, she was taken to theatre and a PEG feeding tube was inserted into her stomach.
She was hooked up to a machine that drip fed her formula, straight into her stomach, for 10 hours overnight and for the first time since she was born she managed to sleep a whole night. Before being discharged we had to learn how to deal with the tube, and the machinery. After a day of learning, the team were happy and she was discharged on February 17th (the day before her 2nd Birthday).
Things improved over the next few months. Ella finally started to show a little interest in food and would ask to try things. She didn’t always eat it, she’d just lick it or nibble it, but at least she was finally showing interest. She would still have days where she wasn’t interested and she would eat nothing at all.
Currently Ella’s diet consist of small amounts of yoghurts, crisps, biscuits and ice lollies because all of these are all broken down well when they are chewed and so don’t bloat her stomach out.
Night times are still a struggle as Ella sleeps very little and when she does sleep, she wakes often needing attention throughout the night with her feeding machine or tube or pain and She also has severe constipation regularly which is painful and distressing for her. but her quality of life has improved since having her feeding ‘tubie’.
She has had a couple of infections around the tube site and the tube was leaking for a while, causing soreness on her skin and so she had a new tube inserted this year (2012)
She is still on medication to help the movement of food through her digestive system, daily vitamins, laxatives and medication to eradicate any bacterial overgrowth.
Ella is 3 now and enjoys going to pre-school and playing with her sisters and doing most things but she still has episodes of pain and discomfort which can be so severe that it can cause her to not be able to walk This usually happens when the gas has built up or moved down past where the tube site is and so we are unable to release it.
In the next year Ella will need some of her tests repeated and hopefully she will benefit from the new High Resolutuion Manometry Catheter that PORT have funded as this will allow 3 tests to be carried out in 1 meaning a lot less distress and discomfort for her.