Courtney's Story

Courtney was born on 14/01/2004 weighing 5LB 2OZ, she was bought into the world via emergency caesarean section.

Since Courtney was born, she always struggled to empty her bowels, however drs and nurses said this was normal due to the fact that she was formula fed, fast forward to age 9, this is where Courtneys story really begins.

She was admitted to hospital for emergency appendectomy in april 2013, they successfully removed Courtney appendix which were shown to be inflamed and partly ruptured. Courtney then experienced a 6 weeks period of urinary retention, and all bowel movements as little as they were stopped altogether.She encountered severe abdominal pain, distension and was on a huge amount of medication and daily phosphate enemas to try to help evacuate her stools, however this was unsuccessful. After a long battle with the drs, she was eventually referred to Alder Hey hospital for further investigation. 

Again, after several trips across from the isle of man to alder hey and various invasive testing, including manual evacuations, phosphate enema after phosphate enema, anal manometry and biopsies of the bowel, MRI scans she was finally diagnosed with a rare bowel disease called Isolated Hypoganglionosis with Allied disorders, this came as a huge shock to us and the Drs. We were then told Courtney required surgery to create an Ileostomy.

The disease Courtney has is very rare and mimics that of hirschsprungs disease, however it is rarer, there is very little information regarding the disease available.

Courtney was admitted to Alder Hey in January 2014 just a few days before her 10th birthday and she underwent her surgery the following day, this was the worst 6 hours waiting i have ever encountered at that time, Courtney returned from theatre with the operation being a success at that time, Courtney was discharged after 4 weeks of being in hospital. Courtney was and still is amazingly brave, never complains and loves her Ileostomy that she has named ‘Tilly’, courtney loves ‘Tilly’ as she feels so much better having her.

During courtneys hospital stay she had a lot of time to adjust to her new friend ‘Tilly’, however Courtney was quite disappointed that the stoma bags were so bland looking, so little Courtney satfor hours and hours designing her new fashion accessory to make them more appealing and exciting for her to wear. Courtney then decided that all other children that have stomas, should be able to have fun looking bags so we sent her designs to Convatec, who swiftly replied asking courtney to visit them at the factory in Deeside to help then create a new pediatric friendly range of stoma bags. Courtney was super excited to be a part this.

A few weeks after discharge, Courtney complained that she had some pain in her tummy and stoma, she then started to vomit excessively, so we rushed her to hospital, where she was then airlifted to Alder Hay and underwent further surgery for 8 hours  as her bowel had twisted in several places leaving her stoma starved of its blood supply, this set us further back as Courtney remained in hospital a further 3 weeks. Never once did Courtney feel sorry for herself, she just got on with it. Courtney was discharged and things ran smoothly up until may, Courtney’s stoma had a stenosis which is where the intestine narrowed so much that the stool couldn’t pass through.

Courtney had to undergo yet another general anaesthetic for her surgeon to perform a dilation of the intestine and stoma. This was successful and life carried as normal……………………….until November 2014, again Courtney wasn’t well, she had pain and vomiting again, and no output from ‘Tilly” as story i knew all to well at this point, soo of we went via air ambulance again to alder hey where courtney was found to be severely tachycardic which is where the hear beats excessively and is very dangerous, Courtney was rushed straight into the operatiing theatre for yet more emergency surgery which found she has malrotation of the small intestines along with a strangulated hernia and peritonitis just to add to the problems, part of Courtney bowel had ruptured and she required a revision of her Ileostomy which meant a foot of bowel was removed and a brand new ‘Tilly’ was made, this process took a further 10 hours of surgery.

Poor Courtney has endured so much in her little life, experiencing so much more than people her senior ever have, nasogastric tubes, countless IV lines and horrendous surgeries, yet she still continues to smile!!

Although everything seems settled for now, we struggle with Courtney’s weight as she does not seem to absorb nutrients and vitamins very well, therefore she has 5 fortisip compact nutrition shakes per day along with her normal diet to help her gain some weight.