Just 14 months old, Barney has chronic kidney disease brought on by PUV. Whether tomorrow or in twenty years’ time, he will develop kidney failure at some stage during his life.
Barney currently visits the Children’s Kidney Centre for check-ups every two months, though this pattern will change as his condition becomes more unstable. He also attends hospital for regular blood tests and to see his consultant. He also has scans and check-ups with his surgeon.
Below, Barney’s mother answers questions about her son’s condition.
Have you been given any indication of the treatment he may need in future?
He will likely need a bladder augmentation as this was damaged by PUV while he was in the womb. At this point they’ll close his vesicostomy and he’ll probably need to be catheterised, then we’ve been told we’ll probably go on the waiting list for a kidney. Hopefully this will bypass the need for dialysis but we’re under no illusions that we might not be that fortunate.
He will need treatment through his whole life, and we’re prepared for the fact he may need more than one transplant. It is also looking likely he will have to have his ‘dead’ kidney removed in the new year as it has caused a few serious UTI’s lately.
What was it like for you when you were told about Barney’s condition? Were you informed after he was born or had it been detected before birth?
Barney’s issues were first picked up at week 34 of pregnancy. I had a scan due to high blood pressure and they spotted some potential cysts on the kidneys. We were later told it was likely PUV as I had no water left and it was all sitting in Barney’s renal system.
Doctors said his bladder was badly trabeculated (thick walled) and there were potential urinomas around his kidneys – one was as good as ‘dead’ while the other quite seriously damaged – and his urethra was badly dilated. We were told that Barney wouldn’t last more than an hour as the amniotic fluid used to develop the lungs was trapped in his renal system so it was highly likely they wouldn’t be developed enough to process oxygen.
The doctor’s did not believe that Barney’s lungs would work, so not much detail was given about the kidney issues. However, we were told that if Barney were to survive, he would need a kidney transplant. I was induced at 38 weeks in Southampton hospital as the PICU in Cardiff was shut, and transferred to Cardiff when barney was one week old and breathing on his own steam.
How does Barney’s condition currently affect him? Is it prevalent on a daily basis or does it affect him more occasionally?
Barney currently has a vesicostomy high up on his tummy to enable him to pass fluids. This means his nappies leak a lot, and he has to have lots of changes of clothes each day; he has an overactive bladder which means he produces a lot of urine and can become dehydrated very rapidly.
Barney struggles with weight gain due to his kidney issues which led to him being tube fed for the first few months of his life. He is currently 14 months old and we have only just put him in clothes suitable for babies aged 6-9 months, and we have to deal with people telling us our son is ‘small’ on a daily basis. We struggle with getting him to eat, and there are lots of tears.
He also has difficulty keeping his iron levels up due to the kidney damage, and this makes him very tired. We have to try to keep him away from other poorly children, and he has to take seven bits of medication a day and more if he suffers an infection. UTIs are a daily hazard; any sign of illness normally means a trip to the doctor’s surgery or A&E to get a urine sample.
If Barney has a temperature or is a little clingy we have to be concerned that it’s another UTI. The more UTIs he has, the faster his damaged yet working kidney will go into failure. He had to spend his 1st birthday in hospital due to a UTI. Barney has to have all his injections early to get him ready for a possible transplant.
Does Barney have any favourite toys, songs or children’s TV shows which help to sooth him when he is in discomfort?
Despite all he’s going through, Barney always has a smile on his face even when nurses are taking his blood.
He likes to watch Raa Raa The Noisy Lion on Cbeebies, which seems to take his mind off things, and In The Night Garden helps him to chill out. He’s pretty spoilt for toys to be honest. He loves his Duplo and wooden puzzles, but always goes back to his drum which he can push shapes into – the noisiest and most annoying toy he owns, which does his Nanny’s head in!
Is there anyone else in the family who has been directly affected by kidney disease?
No one else has had an issue with kidney disease.
What do you like about the Walk for Life (WFL) series?
Families get together and can chat about their issues. Also awareness for the charity is highlighted to the community. I’m shocked at how little is known about kidney issues by people who aren’t directly affected; we are always asked if Barney is ‘better now?’ Unfortunately, he will never be ‘better’.
What do you think are the main benefits of having events such as the WFL, the Children’s Christmas Party and Cardiff 10K?
They each highlight the issues of kidney disease. The Christmas party was amazing. The children there were able to feel normal for the afternoon and actually be children, which is so important; they go through so much it’s nice for them to have a treat.
Do you think it’s important to fundraise for and support Kidney Wales? If so, why?
Definitely! This money supports families in their darkest moments. It pays for play therapists who entertain Barney while he has his bloods checked. It provides support workers who have helped us claim money from the government to help us with Barney’s illness. Without the Kidney Wales family we would be at a total loss.