Suzi was a twin, both born at 28 weeks due to twin to twin transfusion. Both were ventilated at birth and Suzi weighed 2lbs 11oz. Trauma at birth resulted in a leg injury, her whole left leg up to her hip became necrotic. This then caused an infection and the necrotitis spread half way up her torso and down her right leg. It was at this point that Suzi wasn't expected to survive. Doctors pumped her body full of antibiotics and within time the colour returned to her right leg and torso but her left leg was beyond repair. My poor tiny baby had to go through agonising dressing changes as her leg mummified and died. At 8 weeks old and weighing only 3lbs it was decided Suzi needed her leg amputated as it was poisoning her body and killing her.
Cerebral palsy was diagnosed the day after her leg injury. Chronic lung disease was a result of her prematurity. She came home on oxygen and remained on it for almost 4 years. Suzi`s twin sister Neha sadly passed away at 12 days old due to kidney failure, she was only 1lb 11oz.
Suzi was discharged from hospital at 10 weeks old. She couldn't feed without sickness and pain and was in and out of hospital constantly with really bad chest-related issues. Each time she was put on an increased dose of oxygen and fed nasogastrically.
At the age of 5, after a couple of tests, it was discovered Suzi was aspirating into her lungs, leaving her lungs very poorly and scarred. She was really struggling to gain weight and was very small for her age so she was to have a feeding tube to help give her a better quality of life. In August 2016 Suzi had her first gastrostomy surgery and her life rapidly went downhill. She has been in hospital for the most part of the past 6 years, doing a year and more at a time. In 2017 it was decided Suzi would be fed into her bowel (jejunal) and have nothing into her tummy. We were hopeful it would work but unfortunately it didn't.
Suzi then went on to have major reconstruction surgery as her right hip was half way out of the joint and twisted. She then spent months in a spinal cast but she was so thin that the metalwork inside her hip/leg was causing friction underneath her skin and had to be removed.
Suzi has had two major bowel surgeries and a colostomy which worked initially then her rare bowel condition caused the colon to twist and block. She was in hospital for almost 15 months and just got home in December 2022. During her stay she was put on tpn and had another bowel surgery and now has an ileostomy. Suzi's colon is unfixed on both sides and just floats and twists about.
Over the years Suzi has had to endure painful procedures to try and help her bowels work. She has had countless scopes and biopsies and been sent to Sheffield for more investigations and surgeries on her bowel. We discovered last year that Suzi only has one healthy, fully working kidney and the other one is very small with little to no function. Also her bladder issues have got so much worse to the point she is going up to 16 hours with no urine output. This causes her a great deal of pain. Now, due to being in hospital and being so very poorly for so long, she has been left with a severe scoliosis on her spine which is sadly beyond repair. She can no longer straighten her right knee or even stand in her standing frame and she has lost the muscle range in her wee hands.
But, taking all this to the side my girl is the most amazing, loving, kind, caring, sassy, funny little diva ever. She loves life, she loves people and she just wants to be accepted for who she is. Suzi will never be well, there is no cure so it's all about managing her symptoms and trying to create as many precious memories as we can. Suzi will never have the chance to do what so many of us can take for granted but she is an absolute warrior and brings so much pride to me.