PUV Conference and Putting the Patient in Research

Hello there, and welcome to the Hidden Everyday.

This is my second post, and it a long one so please bare with me. In short, I was invited to a conference about Posterior Urethral Valves and I’ve given a summary of what was discussed in this blog. Being invited to it and volunteering within the renal/ urology research world makes me think it would be great to speak with others in a similar position as parents/ carers, so that we make sure our views and experiences are reflected in research (if you’re interested feel free to email me via thehiddeneveryday@gmail.com).  

This post is a bit different to my previous post so I’ll write a less research based one soon, I’m aiming for one on nutrition, and in the mean time hope this one is useful. Finally, before I get into the main body of the blog, I just wanted to say that I hope you are ok today. PUV and thereafter can be a tough, confusing road and I hope through reading this blog it offers a little bit of support.


I started a research PhD when I found out I was pregnant with my son. For the last few years I have taken time of from my PhD as my son’s care/ his transplant/ the pandemic/ general life have been difficult enough to balance. Research is something I’ve always been interested in and seeing things from a carer perspective has made me think that patient experience, what is important to patients and carers, needs to be in the core of research… because, at times I’ve been frustrated about the questions that are unanswered within my son’s condition and treatment.

I saw an advert for parent/ patient volunteers to sit in on British Association of Paediatric Nephrologists’(BAPN) Clinical Study Group meetings; they are the committee which support anyone working in paediatric nephrology with their research into kidneys in the UK. As an organisation they want perspectives from Allied Health Professionals, Patients and Carers about kidney research. They are also making links with the urology world so that there is greater connection between the treatment and research into kidneys and the bladder. I was beyond pleased to hear this, as I’ve often felt baffled by who to go to for what and when my son was first diagnosed, I couldn’t make sense of the treatment pathways being separate, especially when the organs are so related. If you’re interested in this, Kidney Research UK have information about volunteering in this way.

At the end of November 2021 I was invited to the  1st International Study Group of Posterior Urethral Valves conference (online) to listen to professionals from around the world discuss their research and treatment pathways, I was also briefly asked to give my perspective on the experience of catheterisation. This is the first time this conference has happened, and research into this field has only been happening for 40 years, so, to me its exciting as it feels like there are researchers around the world who are working hard to find the best outcomes for our children. I wanted to use this blog post to sum up some of the things that have been discussed at this conference with my reflections so that it keeps you in the loop too.

From my small involvement with the research world of PUV and Kidneys I get the impression that there are a lot of clinicians and researchers who want to hear the patient/ carer perspective so that research can reflect the needs of the patient group properly. If you’ve found this blog you may have lots of experiences of urological/ renal conditions and treatment, in particular the reality of managing health alongside the everyday, we also know what does and doesn’t work for our kids at home and in hospital/ clinic. If its of interest to you to get involved with advocating within research, please feel free to email me at thehiddeneveryday@gmail.com so we can come up with a plan together. As a forewarning, I am not sure how the group will structured at the moment and everything is voluntary, but I think the key thing is to see who is interested and take it from there. At the very least we can have a chat and I can make sure the views are reflected in the meetings I attend. I’m keen to do things online and in an accessible way so please feel free to give me an email it would be great to hear from you.

Research Digest: 1st International Study Group of Posterior Urethral Valves: A summary

The conference was online and consisted of a large delegation of attendees from all round the world. The aim was to create a community of shared learning, practice and research so that clinicians around the world can support each other to best care for children.

Lots of the sessions discussed the technical surgical side of things, which instruments to use how to approach it, best practice, etc. I won’t go into this side of things, but I’ll share the reflections that I had that I felt I understood. I sat in as much as I could but I was juggling childcare and the conference so no doubt will have missed something.

As an overall reflection of the conference, there is a greater awareness of the need for more psychosocial support for patients. Some hospitals are set up to have social work, psychological support and family support alongside regular clinics. There is limited consistency with what is available and the level of support but it was reassuring to see that this was discussed.

Occasionally the terms compliance or non-compliance were discussed. Basically how well a child/ carer sticks to the child’s medication/ fluids/ care management. In my view, the care for a child with PUV, the subsequent care required for renal/urological/comorbidities is complicated and difficult to manage alongside everyday life, work, school etc. It’s difficult to share the load of this care, then throw extended hospital admissions in, it makes ‘compliance’ difficult to manage. It made me think that by sharing the patient/ carer experience of everyday life perhaps we can at least raise the question about whether a treatment plan is realistic and manageable. 

Antenatal Session:

It was good to hear that the general feeling is that there should be more scanning and support, in some cases early intervention while baby is in the womb is possible, amniotic shunting. I think from my own experience I feel that this should be a standard for all pregnancies. When I was pregnant the clinical assumption was that as a low risk mother I’d have a low risk baby, which meant that my last scan was at 20 weeks and the PUV were not picked up until after my son was born, even when I didn’t feel right it was put down to me being an ‘anxious’ first time mother. It would be useful for there to be more awareness about PUV, a right to access further support if you feel something is wrong, and also for sonographers to be more aware of what PUV is and clinical risk factors to be evident.

Neonatal Session:

I was blown away by this session, in particular by the Sick Kids hospital in Toronto. They have a diagram which shows how a child should be assessed and which treatment options are best for them. Later in the conference Sick Kids also talked about data analysis they have done which has allowed them to create a model to predict when children will need different types of treatment.  Pathway. I suggested that this would be an excellent tool to help for patients and carers to see the thinking process and what is likely to happen following a diagnosis and progression of disease.

From the discussion between clinicians and researchers at different centres, there isn’t a completely universal approach to treating PUV and different hospitals have different approaches for example when to introduce a drug or at which stage to do specific surgical interventions. There was lots of discussion about when valves are removed and also the criteria for their removal, some children have completely blocked ureters and some have partial. The purpose of having these discussions around best practice to make sure care for all children is appropriate.

Within this session there was also a discussion about the use of Oxybutynin. There is a Randomised Control Trial now taking place for the use of this drug, what this means is that children who are eligible for Oxybutynin will either be offered this or an alternative treatment. In essence the purpose of the research is to find which treatment is the most appropriate.

Bladder Dysfunction in PUV:

Bladder dysfunction and continence were discussed in this session. In my experience, from birth the concept of incontinence is often mentioned and so I was led to believe that my son would never be continent. Then fast forward a couple of years and early potty training is mentioned. I found it a massive inconsistency to both think your child will be incontinent and then to encourage early potty training for continence.

This was the approach suggested at the conference, please note if you’re about to start or thinking about potty training run this approach by your clinical team and make sure they are happy with the approach:

  • For boys with PUV there is less sensation in the bladder so they may not feel the urge to wee although the bladder is full or recognise they are weeing.
  • When? Start potty training early, not necessarily when a child shows signs of wanting to do it. The benefit of this is that clinicians can see how the bladder is working, its capacity and can make appropriate interventions and assessments. An ideal age to start would be
  • How? Potty train by the clock, a child should urinate approximately every 2 hours. Set an alarm or watch the clock that you and your child can use to guide when to use the toilet. Double voiding is encouraged to remove any residual, basically asking a child to wee after they have done a wee.

Other resources are available on the ERIC https://www.eric.org.uk/ website.

Our personal experience of potty training. I got so confused by the various googling of potty training that I wasn’t sure of the best approach, in particular with the ureterostomy. So I made the belts and then we had a potty around the house for ages and didn’t put any pressure on my son. I think we tried out multiple different types of potty too. I think from around 2 years old we practiced sitting on it (usually in front of the TV) and then gradually my son started to use it. I then got some clear advice and after a while we started using the timed approach and that seemed to work, fewer accidents etc. Potty training coincided with multiple long hospital admissions, that was tricky to manage. We went through several rounds of ‘continenet-ish’ then nappies then back again. The game changer was just saying to my son that we’ll get rid of the nappies and starting regular catheterisation.

Back to the conference. Some of the procedural things that were discussed were, when to choose different interventions like catheterisation and surgery. The general consensus was that clinicians will treat each case individually, but always try and approach treatment with the least invasive option first. In some centres there are diagrams of decision trees about treatment pathways, in my personal opinion it would be useful for parents to have a copy of this when they are speaking with clinicians so that next steps don’t come as a shock, but I’m not sure if this was possible.

The last thing discussed in this session was about Visual Urodynamic Assessments (VUD) which is where a child is scanned while they wee. The logistics of this are that a child is lying down on a bed with the scanner above them taking scans as they urinate. Usually in these rooms a film/ distraction can be put on and a parent can be present. The research asked patients how they felt about it, and the results said that patients felt the procedure was better than they expected it to be.

Kidney Function:

This session discussed the management of kidneys alongside PUV and bladder dysfunction. Presentations discussed when and how to monitor kidney function, and identify markers of decline or improvement and what this means for a treatment pathway. This was discussed in a clinical way, and were referred to as ‘Risk’ profiles. I did wonder whether having a risk profile shared with families with a rough idea of the next steps may be useful for patients and families to monitor their health at home, identify when to seek help and also identify/ prepare for what next steps could be.

Within this session they talked about managing the bladder to delay the progression of renal disease and also what to do if a child needs transplantation. Management options included catheters, medication and surgical options, like a ureterostomy or mitrofanoff.

Blood Pressure was also discussed in this session. They discussed that BP is regulated by the kidneys, and in some cases with renal disease following PUV there can be complications with the cardiovascular system, this is why it is monitored. In some centres they support patients by training carers to do observations on their child BP, temperature, urine analysis etc so that if calling for advice, simple measurements can be taken.

Research in PUV

A big question what causes PUV? The explanation given to us on my son’s diagnosis was that is it’s a case of bad luck. I’m not sure I can ever accept this. It was great to hear that research into what causes PUV is being done, in addition into research treatment of the bladder and ways to protect the kidney before damage occurs, one example is research using stem cells. Treatment and support for PUV patients is relatively new (40 years) and so this conference, alongside a PUV researchers network aims to unite to develop equal and appropriate treatment pathways and protocols for all children for use internationally. There is also research into machine learning and using data to develop treatment pathways to treat children and give them the best help before illness occurs.

So, in short that is the outcome of the conference. There was lots of discussion and I’m sure it’s the start of lots more to come. I will keep asking and finding out about research happening and when I can will share the information. It was great to attend this conference and learn what is happening within research/practice to treat our children. Generally I got the impression that there are a lot of people who are doing their upmost to try and help our children, but what I think is missing is the reality and the patient/ carer voice and in what a PUV diagnosis is, and what it means.

Thank you so much for reading, I hope to hear from some of you soon and hopefully as a group we can make sure the patient/ carer voice is in research.

Have a good day,  



What are Posterior Urethral Valves?

What are Posterior Urethral Valves? :

Over the past year I’ve wanted to start a blog to provide a resource of practicalities of parenthood and caring for a child with a hidden health condition. It’s based on my experience of my son’s care within the renal and urology healthcare world.  

I’ve been thinking about the best place to start and decided to start at the beginning. Posterior Urethral Valves, the first diagnosis my son received, our experience, the impact and what it means. This I hope will set the tone for the future blog posts and also give some hope to the reader. In future posts I’ll discuss Chronic Kidney Disease and Transplant, but for now I’ll start with PUV.

For reference, I’ve included links to useful websites throughout the post, and at the bottom. The information I’ve written here is taken from InfoKid, Evalina and the GOSH websites, they are informed through the work of the NHS.

Our experience:

I was told throughout my pregnancy that I was low risk and everything was normal. This all changed when my son was born, he was born needing immediate help. Within the first few days of his life it was found that his kidney’s and bladder were damaged. It was at this point that we were first told about Posterior Urethral Valves (PUV).  In short, his valves had completely blocked the bladder’s ability to drain and his bladder and kidneys inflated; like a water balloon.  His bladder is about 3 times the size it should be. His kidneys were functioning at around 10%, for the first couple of years of his life he had limited kidney function and around 2.5 years old he had a kidney transplant. The PUV were removed shortly after birth, and since his health has been managed with diet, nutrition, catheterisation and some surgeries.

The initial diagnosis was overwhelming and led me to go down various routes in Googling. For my son PUV caused damage to his kidneys. As a family we have grown used to the uncertainty around managing kidney health, we take each day as it comes and celebrate the wins when we can. It hasn’t stopped my son turning into such a wonderful little boy. He is kind, empathetic, loves to learn and play. He runs around at lightning speed and doesn’t let anything stop him, I will always be impressed by his ability to adapt. I’m biased writing this as his Mum, but seeing him and other children who manage their health as part of their everyday day is inspiring.

In future I’ll blog in more detail about CKD and kidney health, including the practicalities of the renal diet and a baby. Briefly my son had specific formula from a few days old and as he grew and we moved into weaning, we had to cook food in a specific way. Fluid targets and nutrition consume my thoughts, getting food into my son was difficult and now post-transplant it is much better- I honestly don’t think I’ll ever tire of seeing him eat knowing how difficult it’s been. If you’re going through this at the moment, we had some superb advice about managing my son’s renal diet from newborn to toddlerdom from an amazing renal dietician, I’d recommend asking your clinical teams for contact with them. There is also an amazing resource on Instagram called Kidnykids who have some wonderful recipe ideas and Kidney Care UK also have recipe ideas too.

Don’t get me wrong it’s not easy. Coming to terms with everything to do with a diagnosis, managing life as a new parent or with a young baby, explaining things to others, and then managing everything else on top is overwhelming. Some days you’re on top of it some days may be tougher than others. Just know, you’ve got this. You’re doing better than you think. Be kind to yourself and if you feel overwhelmed then please do speak to someone like your GP or someone you trust, its ok to ask for help for you. There are some amazing organisations who can help support you as you adapt to life caring for a child with a long term health condition Contact have some amazing resources.

I think as well it really is important to remember that you and your needs matter, so much is happening and there is so much to process its ok to do things for you and to ask for space when you need it. I always have emergency chocolate and a nice tea bag in my son’s change bag for me, just in case he is admitted to hospital. A friend mentioned they were in limbo and no-one looked out for the family. Hopefully this blog offers a little comfort and to make you feel less isolated,

What are Posterior Urethral Valves (PUV)?

Posterior Urethral Valves (PUV) are tiny flaps/valves which sometimes grow at the back of the a babies’ urethra during pregnancy. They occur only in males and roughly 1 in 8,000 are born with them (GOSH, ONLINE 21).

The urethra is a tube connected to the bladder, it is the tube which urine flows through as we wee. The tiny valves, can block the bladder and cause the urine to build up inside the bladder. How blocked the ureter is can be different between children as can the damage caused. The specialists who will look at the bladder, remove the valves and who may suggest different treatments to make the bladder safe are called Urologists.


Antenatally some of the symptoms may include reduced amniotic fluid, they may be suspected on scans but not always. The Great Ormond Street Hospital has a really useful page with more details for babies, toddlers and older children.

In short, if you suspect there are problems with how your child is weeing, if they have pain or have problems with continence after potty training, frequent UTI’s speak to the GP.

For my son he was diagnosed at around 2 days old. He’d had a blood test as his creatinine level (marker of kidney function) was incredibly high for his age. He was rushed to ultrasound and had a scan of his kidneys and bladder. The whole system had been blocked and he’d sustained substantial damage. We were taken to a side room and told what was happening.

One of the first questions I had was, what did I do wrong? Honestly, I still ask myself this frequently. However, there is no known cause to PUV. Crucially they aren’t due to something that anyone has done wrong.  

What happens next?

How PUV affects each child is different and so what happens next will be determined by yourself and the clinical teams involved in your child’s care.

For some children PUV can be identified antenatally, or like in our case, immediately after birth. They can also be identified later in childhood or in the teenage years. PUV can block or partially block the urethra. The extent of the blocking is different in each child. sometimes block to an extent that the urine backs up into kidneys, which may cause kidney damage. If this is the case there will be a specialists Renal team involved in your child’s care, clinicians involved in kidney care are called nephrologists.

For my son, PUV, caused damage to his bladder and kidneys, for the first couple of years of his life his kidney function was very reduced, and after about 6 months we knew that a kidney transplant would happen in childhood. The valves were removed during his first 8 weeks of life, but his bladder continued to reflux into his kidneys. To stop the kidneys being further damaged, one of the tubes connecting his kidneys and bladder was made into a ureterostomy, a small opening on the surface of the skin that drained urine. This acted as a pressure release valve and over time has helped to stop the urine refluxing into the kidneys.

Where does treatment happen?

I can only speak from a UK perspective, but there are some incredible Paediatric Renal and Urology units and teams throughout the country. I will always be grateful for the opportunity they have given my son to live and thrive.  

Depending on how and where things happen, you may find yourself on a Neonatal Intensive Care Unit (NICU) with your child. The charity Bliss are incredible and here is a guide to what to expect in NICU.

Your child, when old enough, may then be transferred to a Specialist Paediatric Ward. The jump between NICU and then to a Paediatric Ward I found to be a shock. On a Paediatric Ward you are far more involved with your child’s care and you will stay on the ward with your child, which you’re not able to do in NICU. I’m not sure that I was prepared for this, I didn’t even know I was allowed to put clothes on my child do anything. It was a very strange time. It’s also a difficult time as you may be recovering from birth yourself. I found it useful to have a note book at this time and just even write down the odd thing or doodle, just to get things off my chest.

After the initial input your child may be monitored or have different treatments through the specialist centre but you will also have other input from the healthcare service. Your GP is an important point of contact, as alongside all of the specialist input there will be things like vaccinations etc that your GP surgery will arrange. Overtime you may become familiar with your local hospital, where they can provide emergency support. It is useful to ask if its possible to have your child under the care of a local Paediatrician so that as your child grows they can support your child to access the care they need locally. On this, in some cases for local hospitals Open Access can be granted if your child frequently needs hospital support. This means that your child is on the system and you can call to let your local A and E know if you’re headed in/ or need advice regarding.

Alongside this, for younger children there is the health visiting service who will do developmental checks etc. When you see them, it is useful to ask about the Perinatal Mental Health Service, who are specialist health visitors who support families to look after their health and wellbeing with the diagnosis. Looking after yourself can feel almost impossible, but it is really important. This team speaking with your GP, friends, family anyone you trust to help you look after yourself can be helpful. Some of the specialist centres also have specialist support for families who have children with complicated diagnoses. Locally too, check out if in your local area there is a Carers Organisation, as they can help signpost you to support for health and wellbeing, finances, practical resources etc, there may also be support groups to help you meet others in a similar position.  

From my experience and speaking with others there are lots of differences between the treatments children need. Specifically for us my son’s initial kidney failure was managed through diet and nutrition, for some the number of medications is overwhelming. Combining this with specialist milk formula’s, fluid targets and everything else, you become organised very quickly. Some children may need to have the support of a Nasal Gastric tube which allows food/fluid to go straight into the tummy. If it helps, there is a great programme called Get Well Soon Hospital by Dr Ranj there is a programme all about NG tubes for kids which may be of help too https://www.bbc.co.uk/iplayer/episode/b06pyw26/get-well-soon-hospital-series-1-2-ng-tube.

A future blog post will be about routines and fitting things in to hopefully support you. The best bit of advice I can give though is to write things down in a way that makes sense to you. I have a weekly diary I write everything in and take it with us to clinic appointments (how much fluid he’s had to drink, food, meds, timings etc).

Where to find out more information?

There are so many different avenues you can go down when looking for information on your child. I’ve found that some of them are more unhelpful than helpful, so I try and stick to the NHS and reputable sources to not scare myself. In addition, there are some brilliant Facebook groups which are parent/carer led and they offer amazing first hand experience and support if that’s something you would like. Some organisations to look at that I have found useful are ERIC the bladder and bowel charity, Kidney Care UK and Kidney Research UK.




https://contact.org.uk/ .



It is also worth mentioning, and there will be a future post on this. The impact of being in and out of hospital can be demanding on your finances. Speak with the specialist teams about the social workers in the teams to see if they can help you out to apply for benefits or funding to support your child. In some hospitals you can claim back travel and congestion charges. If you’re in the UK Disability Living Allowance links to other support so it is worth considering applying for this, social workers involved in your child’s care may be able to support.

There were, have and continue to be multiple questions I have, and I don’t think we’re the only family to think them. What will my child’s life look like, will they grow, will they be potty trained, how can I encourage my child to drink that much fluid, what do I pack for a hospital visit, what do I need in an emergency?

I’m going to end this blog post here, and use it as a guide to start the next post. It would be great to have your feedback, and if there is something specific and practical please do get in touch. Thank you for reading and I’ll have another post soon.

Lucy x