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.
She then was unable to feed from a bottle and had to have a ng tube down her nose and from 6 weeks old was kept In our local Hospital and referred to the Royal London hospital. Royal London too tried numerous medications and milks but Isla was still unable to feed and not cry, tests proved she had severe reflux but nothing else seemed to show on investigations despite her symptoms still displaying other questionable illness’s.
At 5 months old Isla had a 3 hours operation called a nissens fundiplication. This is where they tie part of the stomach around the ostophigos to stop her from being able to be sick and aspirate into her lungs. She also had a gastrostomy put in to able her to feed directly to her stomach.
Isla was then able to come home gastrostomy fed on special milk, but Isla would still be the same and constantly scream and cry all night in pain, we would always be in and out of hospital with chest infections and her gastrostomy leaking acid. Isla wasn’t putting on weight so Royal London asked a consultant at Great Ormand street to carry out a test called a bowel manometry. GOSH took Isla in April this 2013 as our local hospital was unable to keep her stable. She was loosing weight rapidly and was unable to feed at all without pain and alway had a
drainage bag full of green bile.
A central line was put into Isla next to her heart and they started TPN with is parental nutrition which is all her nourishment through a vein. They did numerous tests but still unable to find anything definitive to suggest why Isla couldn’t tolerate feed of any sort. They tried again to feed her milk which made her very unwell with stomach distension of 10+cm, unbearable pain to which a consultant said she displays all the symptoms of someone who has something mechanically wrong inside. the consultant suggested doing a full thickness biopsy, which was another little operation to take away a chunk of her bowel.
Isla was very unwell after this procedure and took her 2 weeks to recover when it should of just been a simple procedure that they can get patients in and out in a day.
Results finally came back that Isla has a very rare bowel condition that only one consultant has seen and only 2 children known to GOSH have ever had. The bowel itself looks ok, but every layer of skin and muscle and nerves inside are completely imflammed. This has caused psuedo obstruction where the bowel is so inflamed stopped the whole digestive system from working. Doctors are unsure if this will ever change and will be a trail and error with medications and feeding trials.
Isla spent 9 months in hospital, she’s finally been sent home 4 weeks ago still feeding TPN IV through her central line and has been given some medication to hopefully help treat the inflammation, which is steroids and immune suppressive medication. Unfortunately the medication kills her immune system so she isn’t strong enough to fight every day infections. We have in the 4 weeks been home been back in Our local hospital for 2 of them, as she caught a very serious infection in her central line which she had to be treated with some strong antibiotics.
Unfortunately no one knows whether Isla will be able to feed like every one else does. The consultants at Gosh keep a close eye on her and will always aim to try and get her to tolerate food and drink but at the moment it isn’t an option for her. We are just all working hard to keep her well enough so she can spend some time with her family and her little brother jack who misses having his sister and his mummy at home.