Macie was born on the 09/04/2013, 4 weeks early at RVI Newcastle Upon Tyne.
Macie was admitted to GNCH at 6 weeks old to find out she had gut dismotility.
At 8 weeks old Macie was fitted with a central line and had to undergo further and extreme testing.
Macie was diagnosed at 6 months old with a condition called Chronic Intestinal Pseudo Obstruction Syndrome this is caused by Visceral Neuropathy. In non-medical terms it means that the nerves and muscles in Macie’s bowel do not work. The effects of this condition for Macie are life changing; she is TPN fed (Total Parenteral Nutrition) for 18-20 hours a day.
Macie had an ileostomy and colostomy bag fitted at 6 months old due to been diagnosed with Intestinal Pseudo Obstruction. Macie then suffered from server diversion colitis which resulted in Macie having a colectomy (Large Bowel) removed in 2014 which then left Macie with a ileostomy.
Macie had a gastrostomy peg fitted from 6 months old due to Intestinal Pseudo Obstruction for drainage purposes only as Macie cannot tolerate her own saliva.
Macie also suffers from Pseudo Obstruction in her bladder (Visceral neuropathy/myopathy resulting in intestinal and bladder dysmotility disorder) due to this Macie has suffered numerous UTI's since birth which has resulted in Macie having to be fitted with a super pubic catheter form December 2016. Macie has to have bladder washes/medicines and antibiotics on a daily basis into her super pubic catheter to help reduce the pain due to bladders spasms and a continuous urine infection. Macie has had a continuous urine infection since December 2016 which she now has to have a catheter bag on free drainage at all times due to the continuous infection to help prevent this infection spreading throughout her body and causing septic .
Macie also suffers from diversion colitis in her rectal stump and has to have daily medication to control this.
Macie is undergoing further tests due to other problems happening throughout Macie’s body, this includes Metabolic, immunology and genetic testing
Macie is an inspirational happy little girl who has been put through so much in and has had lots of major operations with ups and downs and has been admitted on numerous occasions to The Royal Victoria Great North Children’s hospital and Great Ormand Street Hospital London.
There is no cure for Macie at this moment in time and all we can do is to manage her condition.
On 11th July 2016 Frankie was born - Macie's brother. He also had the same problems as Macie with not been able to tolerate his bottles. We were told that Frankie would not be the same as Macie and had to go through it all again, eventually while Macie was at clinic Cheryl (Macie and Frankies mum) explained what was happening and luckily we managed to get Frankie seen a bit quicker. Frankie has been diagnosed with gut dismotility.
Frankie had a central line fitted in November 2016 at the GNCH due to not tolerating feeds and his own saliva. Frankie was admitted to GOSH in May 2017 unfortunately Frankie became very ill and was unable to continue with all the tests. We have been informed that Frankie has presumed Intestinal Pseudo Obstruction.
Frankie will be returning to GOSH for the rest of his tests later on this year.