Emily’s Story

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.

Emily continued to bleed small amounts and projectile vomiting, she also had diarrhoea, so was often dehydrated.

At 4 months old Emily started to have seizures so was put on medication to control them, at 6 months old Emily was diagnosed with Ulcerative Colitis, we seemed to be spending more time at hospital than at home.

Emily was still not gaining sufficient weight and the run up to Christmas 2003 was a disaster, the diarrhoea and sickness were really bad so we were admitted to the RLH again, Emily was given a nasal gastric tube to feed her, she continued to be sick so the tube was pushed further down the digestive tract past her stomach and small amounts of a special formula were given throughout the day and night. Emily didn’t improve and continued to lose weight.

Ian and I were starting to realise that Emily was a very sick baby, but we really weren’t prepared for what was to be a very tough time for the whole family. We were told that Emily needed a Central Line so that she could be fed TPN-total parenteral nutrition this would ensure that she got all the essentials needed for healthy growth.

That was also the first time we heard the term Pseudo Obstruction.

Emily had one serious infection after another all of which were life threatening, she was translocating bugs from her bowel into her bloodstream she was also pooling fluid then “dumping” it with hideous diarrhoea. Emily became so sick that she had to be transferred to Great Ormond Street and be put on a life support machine, she was such a fighter that she pulled through, and remained a happy little girl, I’m sure I complained more than she did. We were told that for Emily to lead any kind of normal life she would require a bowel and liver transplant. The first step would be to have an ileostomy which she had in the may of 2004.

We were referred to Birmingham Children’s Hospital for tests some of them went smoothly and others were a disaster. Emily had a liver biopsy and bled internally they also discovered that she had other problems with her liver not related to the TPN damage. The Doctors thought Emily had La Fora syndrome (a degenerative disease)so more tests had to be done which delayed Emily being placed on the transplant list, this also meant our son could be affected as La For a syndrome is genetic so this was a very worrying time for us.

Emily began to deteriorate quite quickly, she continuously had infections was bleeding quite substantially from her bowel, needing regular blood transfusions, she was on continuous Morphine for the pain and countless medications just to keep her alive.

As a family we were being pulled apart, I was living in London with Emily and Ian was living at home with our little boy Sam we only saw each other at weekends, they weren’t always happy occasions as Emily was always so ill.

During Christmas 2004 we where able to bring Emily home for a few hours to celebrate with our family but then it was straight back to hospital as she had to be connected to her T.P.N.

Emily spent her 2nd Birthday in intensive care in Great Ormond Street and when we returned to the RLH the nurses had decorated Emily’s hospital room with balloons and banners (she really was a favourite with the nurses).

Emily was becoming worse requiring oxygen more frequently and suffering more and more infections in her central line. We ended up in intensive care units all around London. During a particularly bad infection Emily was retrieved to St Mary’s intensive care in Paddington London where we were told that she might not pull through, but Emily being Emily she did make it and was transferred back to the RLH.

Emily finally went on the transplant list in April 2005 waiting for a new bowel and liver. Shortly after being put on the transplant list Emily became ill with another central line infection and was transferred to King College Hospital intensive care unit.

On May 7th 2005 Emily got her angel wings (no more pain for our little girl, but an eternity for us.)

We have forged so many relationships with the nurses and doctors who looked after Emily. We owe it to everybody to fully research pseudo obstruction especially our little angel Emily.

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