We’ve been supported five times by The Sick Children’s Trust while our son had undergone three major surgeries

Jayden needed three surgeries for a rare condition that was damaging his kidneys. We've support his parents, Sarah and Liam, at Magnolia and Treetop Houses whenever he has needed a prolonged stay in hospital.

At the end of January 2023 during my 29-week scan at our local hospital in Chesterfield we learned that our son Jayden’s kidneys had dilated to 12mm. From that point on we needed to be monitored by the foetal medical team at Sheffield Children’s Hospital. A week later we were told that Jayden’s kidneys had worsened, but the doctors still weren’t overly concerned, hoping that everything would settle down by itself before he was born.

With Jayden’s kidney condition not improving, at 34 weeks the decision was made for his arrival to take place on the Jessops wing at the Royal Hallamshire Hospital, followed by immediate transfer to Sheffield Children’s Hospital so the neurology department could look after him. That plan went out of the window the next day when I went into spontaneous labour, with Jayden arriving six weeks early at Chesterfield Royal Hospital. With Jayden unable to wee and the team struggling to get a catheter down into his bladder, the doctors became increasingly concerned, not knowing what was causing the obstruction. After liaising with doctors at Sheffield Children’s Hospital, Jayden was eventually stabilised but remained in need of specialist care.

“Having a place away from the hospital made such a difference, giving us the security of being so close to Jayden while allowing us to process everything that was happening.”

The following morning, Jayden was taken by EMBRACE to the neonatal surgical unit (NSU) at Sheffield Children’s Hospital. I was still recovering from the birth and my partner, Liam, needed to stay with me, so Jayden made the journey alone. As soon as I knew that Jayden had been admitted, I discharged myself. I was desperate to see him, so headed to Sheffield as quickly as we could. After briefly seeing Jayden, we stayed the night at the hospital before Jayden, at just two days old, was taken into surgery the following morning to try and establish the cause of his kidney problems. It was then that a lady from The Sick Children’s Trust told us we could stay at their Magnolia House ‘Home from Home’ just a couple of minutes away from the ward, before taking us there and showing us around their amazing facility. While there we received a call from the surgeon, who told us that the problem was worse than initially thought. Jayden had anterior urethral valves, a blockage in the urethra preventing him from passing urine that was swelling and damaging his kidneys. Immediately returning to the hospital to meet with the doctors, we knew instantly what a huge benefit Magnolia House was going to be. The surgical team explained the rarity of Jayden’s condition, with only four other cases ever in the UK. With Jayden being so small, the only thing they could do at this stage was fit a pubic catheter, a line just below his belly button straight into his bladder, allowing it to be drained. He was closely monitored at the hospital for the next six weeks, with a second attempt to clear the blockage planned for when he was three months old. We stayed at Magnolia House throughout that time, which was incredible.

As first-time parents this was all completely new to us, and being on the ICU brought many extra challenges. Having a place away from the hospital made such a difference, giving us the security of being so close to Jayden while allowing us to process everything that was happening. When Jayden was a week old he went into renal failure and we received a call from the hospital directly to the phone in our room at Magnolia House. After speaking with the nurse, we went over to the ward in our pjs and sat with Jayden while waiting for a doctor to discuss his blood results. Magnolia House provided us with the ability to be with Jayden at any point day or night rather than travelling over 45 minutes from our home in Chesterfield. I can’t imagine how tough it would have been to be that far away from our two-day-old son while he was this poorly.

After returning home for a few days Jayden suffered an infection, needing further treatment at Sheffield Children’s Hospital. Again, we were supported by Magnolia House, and while it was only for a short time it made a world of difference, giving us one less thing to worry about while Jayden was in hospital. In June 2023 Jayden went back for his second operation, an attempt to remove the blockage. Unfortunately, despite their best efforts to clear it, the doctors said it had worsened. Jayden then went for an MCUG scan, where dye is put through the catheter and an x-ray reveals how it moves through his body. It showed that the blockage had returned, and with his urethra now too narrow, they’d have to wait longer before tying again. We had loads of problems with his catheter, repeatedly becoming blocked and caused infections. Once again, The Sick Children’s Trust supported us, giving us a place to stay at Treetop House, their other ‘Home from Home’ in Sheffield. Located just a few floors above the NSU, it kept us even closer to Jayden while allowing us to rest. One of us would sleep while the other stayed with him, ensuring he was never alone. It gave us a bit of normality, a chance to make a proper dinner, have a shower and get some sleep away from the intensity of the hospital.

In October 2023 Jayden underwent his third operation called a urethrostomy, a procedure that redirects the ureters, the tubes that carry pee from your kidneys to your bladder, to a surgical opening just below his testicles. That has allowed his bladder to learn to hold and release his urine. It was a very complicated surgery – even the consultant needed her old professor to assist as no one at Sheffield Children’s Hospital had performed the operation. Thankfully it was a success, and while it initially caused Jayden’s bladder to collapse, he has recovered well. They plan to reverse the procedure when he’s three or four, but he’s like a different baby since that operation, shuffling around everywhere and always smiling. His kidneys are currently stable so while he’ll continue to be monitored at Sheffield, he’s doing so much better. We’ll be forever grateful for the amazing team at Sheffield Children’s Hospital and The Sick Children’s Trust for all their support.

Sarah Frisby, Jayden Brown’s mum.

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