My son’s kidney story [3/3]

Daniella Effrim-Botchey, tells of the real-life struggles of a mother-to-be whose unborn son who was diagnosed with posterior urethral valves (PUV). She poignantly describes the emotional work of coming to terms with the diagnosis and how she adapted to caring for her son whose kidneys would ultimately fail. When faced with difficult circumstances, she found meaning and learned resilience, self-love, appreciation and patience. [3/3]

Just before Christmas I got a call from the hospital the day after we went in for Oliver’s monthly check-up, to say we needed to get to the hospital.

Oliver’s kidney function had gone from 86% to just 10%! How could I not have seen the signs? We had made two doctor’s trips within the month, that had reassured us it was nothing serious, just a viral infection.
I was livid. As we got to the hospital, we were surrounded by doctors and nurses that wanted to take bloods and take him for a kidney scan. It took seven attempts to get a cannula into his veins. After the fifth attempt Oliver was screaming and crying like he had been possessed, and my partner told them that Oliver had had enough and that he was too exhausted from being poked. We couldn’t bear this any longer. They calmly told us that Oliver was the most concerning patient on the ward and his body was shutting down. Only then did we understand the severity of the situation. We made it out just before Christmas while I watched a family of six separate for the festive season. My heart broke as I heard the mother tell her kids she wasn’t coming home for Christmas.

I am guilty of questioning my decision to not terminate the pregnancy when I saw my son hanging on for his little life; was I selfish to bring my son here on Earth knowing he wasn’t healthy?! These are questions I dare say out loud in fear of judgement but feel it’s important to lay my soul bare as a kidney mum.

Oliver is now classed as having chronic kidney disease stage 5, along with PUV. His right kidney had been damaging what little function the other kidney had. He had his right kidney removed after his first birthday and he started to stabilise. Oliver also has had three video urodynamic tests, which test the flow and pressure of the lower urinary tract, the bladder and tube through which you pass urine, X-rays are also included. He has also had two Botox injections into the bladder, which help with bladder spasms and reduce the frequency and urgency of needing to go to the toilet and urinary incontinence. These injections have helped Oliver’s condition significantly. Oliver’s body also cannot hold on to water which is why PUV boys can get dehydrated, so it’s always important that we have water available, especially during the summer months.

Our daily routine consists of catheterisation every 3-4 hours with an overnight drainage bag, medications 16 times a day with monthly check-ups at the hospital. Oliver is on the cusp of needing dialysis.

The shunt procedure consists of a large hollow needle being inserted into my stomach while awake, then a smaller needle going inside the hollow needle with the shunt at the end that goes into the bladder of the baby. During the procedure we could see the shunt being inserted into my son on a screen, as if a normal scan was being done. During the first attempt Oliver dodged the shunt making the situation tenser, but after the second attempt it was in!
With my last test to be a kidney donor completed I am optimistic about the future. Even if things do not work out how I expect them to, Oliver has taught me my life lessons in the face of anxiety and depression.

The shunt then allowed all the urine to be drained, which we saw come out of the hollow needle. After the smaller needle was removed, it was crazy to see my son’s urine come out of my body whilst still inside of me! It seemed to have worked and I was relieved to know my son must also be feeling some pressure taken off of his bladder from all that built-up urine.

I realised I had to surrender to our situation to find some peace, and despite everything I am grateful to see life in a different light because when things do not go so great we always get through to the other side with appreciation for the great memories we get to create along our kidney journey.

I believe when we are faced with difficult circumstances in our lives there is always a meaning behind it, even if you don’t see it straight away. Oliver has taught me resilience, self-love, appreciation and patience. I continue to learn from my precious gift every day; being a kidney parent is awesome.

[End of Part 3]