Blog

Isla-photo

Isla since birth has always had a problem when It comes to feeding, she didn’t just have a bottle and settle she had a bottle and cry for hours or be sick. She was started On the basic of reflux meds and numerous different milks but nothing seemed to work.

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charlie-photo

Charlie was born 4 days overdue on the 28th August 2008.  Due to prolonged labour with no progression and a drop in Charlie’s heart rate, he ended up being born by emergency caesarian section.

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ella-photo

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.

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Lukie 001

Lucas (we call him Luke or Lukie) was born May 13th 2008 as a healthy full term baby. Luke never ate as much as we tried to force him. On day 2 we realized he had never passed meconium (the first stool that most babies pass with in the first few hours of being born). That night the gas built up and put pressure on his lungs causing him to turn blue and needed oxygen.

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PORT Charity Day 006

Pseudo Obstruction Research Trust Patient Information Day 2015

On the 9th October 2015 P.O.R.T. held its first Patient Information Day, which was a huge success. It brought together patients, family members and professionals to share knowledge about the CIPO and related conditions as well as for patients and family members to meet others who truly understand, forging friendships and gaining a support network. The day was very informative, with talks from a range of consultants with different areas of expertise, and patients had the chance to ask questions as we had Q&A sessions with the consultants after their talks. This meant knowledge was shared, questions could be asked, but also, patients could feed back to consultants what was most troubling and most important to them, and patients came away with a better understanding of their condition and its treatment and management.

In attendance were P.O.R.T. Chairperson Sue Stewart, and Trustees Sonia Frost and Lucy Watts MBE, with consultants Professor Qasim Aziz, Dr Adam Farmer, Dr Nigel Meadows, Dr Nikhil Thapar, Dr Michael Glynn and Dr Jayne Gallagher, along with P.O.R.T-funded research nurse Laura Brockway, and approximately 60 patients and family members.

Feedback was overwhelmingly positive and we hope to hold more Patient Days in the future.

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becky-photo

Becky can never remember eating without it causing her pain. This pain can vary but at times is so severe it causes her to collapse. We noticed the pattern of “after eating” pain occuring when Becky was approximately 5 years old. We constantly visited our local doctor a paediatrician and on numerous occasions ended up at casualty but no one could find a reason for the pain. Becky got on with her life the best she could always suffering pain. When Becky was 8 years old she developed a growth in her mouth, she was referred to an oral surgeon who informed us that her saliva gland needed to be removed. The growth was sent for biopsy, the result was an unexplained trauma that caused the cyst to grow, the cyst was benign.

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emily-photo

Our beautiful Emily was born on 21st March 2003, the hospital visits started pretty much straight away. Emily was a “sicky” baby and wasn’t interested in feeding, She always seemed to be underweight, lots of
coughs and colds and infections. At 5 weeks Emily bled heavily from her bowel, we were transferred to The Royal London Hospital, initially it was thought that Emily had an intussuseption – where the bowel folds in on
itself. Eventually it was concluded that it was caused by a milk allergy, so I had to stop breastfeeding and Emily was started on a part  digested formula.

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IMG_8746

I had been fit and healthy weighing about 12st through all my younger years and indeed for the first half of my working life. In my early forties I first suffered severe stomach pains on an occasional basis which gradually became more frequent. This was in the early 80’s

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ruby-photo

Ruby Skye Johnson was born on 6 th April 2007. Straight away she went to the special care baby unit where they discovered her bladder was 10 times the size it should be. The only way to correct this way to have a long term catheter fitted through her tummy. She had problems with her bowels too, but they appeared to resolve by themselves and after 3 very scary weeks she was allowed home. Mum and dad trained up how to change the catheter and things settled into some kind of normality for a few months. But then she started having problems with her bowels. They would obstruct, but an x-ray would show there was no mechanical obstruction; it was a case of the bowel randomly shutting down. Her stomach would blow up to huge proportions and she would require hospital admission because of vomiting and dehydration.

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