Please welcome my first guest blogger, very good friend and amazing mum Natalie aka The Spoonie Mummy. As part of Urology Awareness Month Natalie will share her story about her son Riley's Urology problem. Definitely worth a read!
Riley is my youngest son and is now almost six years old. When I was 30 weeks pregnant my midwife did the usual fortnightly bump measuring and decided that my bump was smaller than she would like, so I was booked in for a growth scan to check on the baby at the hospital. It turned out his size was fine but they picked up on another problem, his kidneys were measuring much bigger than they should have been.
We were told our baby was suffering from hydronephrosis. I was immediately horrified and worried that I must have done something wrong. The doctor assured me that that wasn't the case and sometimes this issue quickly resolved itself after birth. I was told that a paediatrician would be present at the birth to check the baby over immediately and that he would then be seen in an outpatients clinic at a later date.
The same happened again just 6 weeks later and I had to have another scan which showed a baby who was growing perfectly but whose kidneys were still much too big. My perfect baby boy entered the world at 11.45pm on November 1st and the pediatrician was happy with his initial checks but asked me to collect a urine sample from his first wee. You can imagine the fun I had with this (and my mum too who was attempting to help).
Riley was put straight onto Trimethoprim (an antibiotic). We had been told that this would be the case before he was born and he took it daily for the first two years of his life. This was to prevent UTI's as getting one so young could make him extremely poorly and hydronephrosis means you are more likely to develop them.
We were told that 4/5 cases would resolve by themselves and then other causes would need to be investigated. These included a blockage in the ureter which would cause urine to back up behind it and into the kidney. It can also be caused by reflux which is when the bladder does not empty properly and then forces urine back up into the ureters and kidneys.
Over the following nine months Riley was seen by the pediatricians at Southend Hospital. Various scans and tests were done which were all hard to see my newborn baby going through as they often involved nasty injections and being pinned down for scans. When he was nine months old we were grateful to be passed over to Great Ormond Street Hospital as unfortunately, we were getting nowhere with the doctors at Southend.
Walking into a place like Great Ormond Street with your child is the most daunting thing, but I can't speak highly enough of the place and the people that work there. It was determined that Riley had 'mega ureters' - they were just extra large and there was no blockage or reflux occurring which was great news. He was first seen every couple of months, before moving to six monthly visits followed by yearly visits. At his appointment last March he graduated to two yearly appointments as he is currently stable and should his condition change it is not something that would happen quickly.
At his appointments he starts off with an ultrasound which takes photos and measurements and then we usually have time for some lunch (and sometimes a visit to the park or nearby British Museum) before going back to meet with his urology consultant.
Since his appointments became yearly he also attends approximately two weeks before this for a kidney function test. He has to have a small amount of radiation injected before being taken to be scanned while sat on a toilet so they can watch it travelling through his kidneys and assess how well they are working. The one side which is more severely affected does have a slightly lower function but not by a lot and in no way different to many people who have one kidney that works slightly harder than the other.
At his last appointment his doctor explained that as he had remained stable and only suffered with one mild UTI (he was straight in at the doctor's and onto antibiotics as fast as I could get him when I noticed his temperature spike) he would have two yearly appointments and possibly move to even further apart through childhood. When he turns eightenn he will be referred to an adult urologist for them to do their battery of tests and as long as all those are okay he will be discharged as once he has stopped growing nothing will change the size from then on.
He will have to continue to stay very well hydrated, as he does now. As his ureters are so much wider, his urine travels through them slower than ours. This can leave a 'sediment' which could, in turn, cause a UTI and that will be the case for the rest of his life. At any sign of a UTI (high temperature, pain on urinating, urinating less etc) I have to get a urine sample straight into the doctor's to be tested and get him on antibiotics. His urologist also advises he drinks probiotics to encourage good bacteria in his system.
Riley is now almost six and is doing extremely well. He is very bright, extremely loving and very funny. He drinks a lot which is helpful as my oldest has to be encouraged to drink constantly and doesn't have to have nearly as much as Riley. I do still wonder if that is because he is in pain sometimes as he can often say he 'needs' a drink and is very desperate rather than just being a little thirsty. He doesn't complain though and I am happy that anything wrong isn't too severe for him. A big challenge for me was him starting school and having to reiterate that he needs to drink ALOT and have them understand it is a medical necessity and not just a parent request.
This month is urology awareness month and it is important to help spread the word of these invisible conditions so people understand and respect them. I feel lucky that Riley has avoided surgery (after reaching the age of five with no major issues he now only has a 5% chance of needing surgery in the future for this. There are many urology conditions causing numerous issues for people, including them needing a urostomy like Rachel has. Please help us raise much needed awareness by sharing the post and educating yourselves and others about what people with these invisible illnesses go through.
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