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Little Evie was born 31-8-2022 2 minutes older than her twin sister Ruby. Exciting times ahead quickly turned scary Evie was born with  a very rare condition that affects 1 in 50,000 births. Drs had never seen this and were puzzled at what was going on with Evie a specialist was soon flown in to see Evie and meet with her parents that’s when we found out exactly what was going on Bladder exstrophy and epispadias was her diagnosis. 

Bladder exstrophy is a congenital abnormality that occurs when the skin over the lower abdominal wall (bottom part of the tummy) does not form properly. The bladder is open and exposed on the outside of the abdomen. In epispadias, the urethra does not form properly.

Problems that came with this were 

• Problems with the neck of the bladder and sphincter (ring of muscle that squeezes and relaxes to let urine flow from the bladder)
• The bladder has a smaller capacity than usual, so cannot hold much urine 
• The ureters join the bladder in a different place to normal
• The middle part of the pelvic bones are separated

Evie was left with her bladder on the outside requiring Mum to get very familiar with dressing and caring for this so that they could all get home and adapt to the new normal. Evie was very quickly transferred to the Royal Children’s Hospital under the care of a world renowned surgeon and his team after many appointments a date was set for a massive surgery at only 4 months old and looking upwards of 10 hours in surgery, Evie was set to spend her first Christmas in hospital Away from her big sister Remi and her twin Ruby.

Luckily for the family her surgery was pushed back a few days so they got to have a Christmas at home together. The day came and it was the hardest thing I have ever done handing my 4 month old baby away to the drs walking her down the hall she was screaming it was the LONGEST day she came out of surgery after a very long 9 hours and from there kicked every goal in her sights.

She was coated in tape holding down cords and tubes 4 catheters, IV, and a drain. She was bandaged from the waist to her toes in a mermaid wrap to keep her still so no damage was done and recovery could begin. 

During this time we were lucky 

Her recovery was rather smooth there wasn’t any major hurdles and everyone was always pleased with her progress. After 3 weeks in hospital we got to go home we had 2 catheters still in that we had to manage and dressings to change Evie slowly changed from her happy always smiling little self to a very unhappy and grisly baby only finding comfort with mum and no one else it was then we found out that she was having bladder spasms as the bladder began to heal. We maintained the catheters for 6 weeks and then they got to come out and wow our happy bubbly smiling baby was back 2 days later she rolled for the first time and that was the first of many milestones she hit at the same pace as her sister. Evie has always had regular scans and checks with her specialist and his team Now at 2 years old Evie is going strong her bladder isn’t growing as it should and it doesn’t hold meaning she is incontinent, we have a long road left with multiple more surgeries predicted lots of unknowns as it’s a condition that is very unpredictable and different to each patient.