I burst into tears of relief at Chestnut House as we had somewhere to stay close to our poorly baby

During a 16 week scan Lily and Ashley found out their daughter, Ruby's, kidneys were dilated which made it unlikely she would survive. Chestnut House kept them together while she received specialist treatment.

My partner Ashley and I had suffered many miscarriages before falling pregnant with Ruby. After many appointments and tests in the St Mary Hospital, Paddington they found out that I had a condition which makes my blood clot and this was causing complications during pregnancy. In July 2019 we were so happy to find out we was pregnant again but a little nervous due to our previous experiences.

We were seen at St Mary’s weekly and I was put onto clexane injections, which prevents blood from clotting. At our 12 week scan they were satisfied that the injections were working and the pregnancy was developing well, so I was discharged back to our local hospital in Clacton-on-Sea.

Ashley and I decided we would like to find out the gender of our little miracle and booked a private scan at 16 weeks. This was meant to be a happy time for us but instead our world came crashing down. The sonographer told us that both of Ruby’s kidneys were dilated because the tube that is connected to them was too narrow and this was causing a blockage. She wouldn’t be able to have an operation to widen the tubes until she was born which meant it was unlikely she would survive. We were devastated and from then on we could only take each day as it came throughout my pregnancy and hope that her kidney’s didn’t grow too big.

“It was the early hours of the morning when we arrived at Cambridge and we just settled with the fact we’d probably have to sleep in the car for now, whatever it took to be by Ruby’s side.”

We were referred to Colchester Hospital to see the fetal medicine specialist for what felt like the longest weekend of our lives. After further scans the consultant advised us that her right kidney was fine and it was just the left that was dilated. This was a slight relief as at least we only had one kidney to worry about. He was happy to scan me every month to keep an eye on Ruby’s kidney and go from there. At my 28 week scan the consultant decided that the kidney was getting bigger and bigger and it was best that we be referred to The Rosie Hospital in Cambridge. Once we got there we saw a lovely man who scanned me weekly and scheduled us for an elective caesarean at 38 weeks, as this would give Ruby enough time to develop in the womb without her kidney enlarging too much.

We then returned home however at 37 weeks I went into labour and while being assessed back at Colchester Hospital they told me I would not make it to The Rosie and that I would need an emergency c-section there. Our little Ruby Rose Cassels was born weighing 6lb10 and after a quick cuddle she was whisked away by the doctors and taken to the Neonatal Intensive Care Unit. Ruby needed to be attended by the specialists at The Rosie Hospital to assess her kidney and decided on the next steps. Arrangements were made for her to be sent there by the Acute Neonatal Transfer Service, an amazing team who do a fantastic job of taking your little baby safely between hospitals. We didn’t travel with Ruby as I was still recovering from the surgery and the hospital didn’t discharge me on time, so we didn’t leave until an hour after her. Me and Ashley were so concerned on our journey to Cambridge, not only about Ruby, but where would we stay and how would we afford it. It was the early hours of the morning and we just settled with the fact we’d probably have to sleep in the car for now, whatever it took so that we could be by Ruby’s side.

“When we were shown our room at Chestnut House I burst into tears. Tears of relief as we had somewhere to stay just a couple of minutes away from our poorly baby.”

After checking in with Ruby at The Rosie and seeing that she was stable the nurse who was looking after her told us about The Sick Children’s Trust and brought us down to their ‘Home from Home’ Chestnut House. She showed us around the amazing facilities and told us that there was a room available for us to stay in. As soon as she left to let us to settle in, I burst into tears. Tears of relief as we were able to sleep in a bed, with our very own bathroom while only being a couple of minutes away from our poorly baby. The staff and the other families who were staying at Chestnut House were so kind and supportive and it made a really difficult time just that little bit easier.

Ruby spent the next week in Cambridge while she had several scans to determine what operation she would need. She was also on a feeding tube and a solution to keep hydrated during this time. Because of The Sick Children’s Trust we could be by her side at any time of day no matter what, rather than worrying about how we would get to the hospital as we live two and half hours away. We felt very nervous about returning home when Ruby was discharged, but we were told by everyone at Cambridge to call if we had any concerns and they would see us straight away. We were also shown how to look after her and the things to look out for should she take a turn for the worse which helped to ease our minds. We are waiting for Ruby to have an operation on her rather large kidney to widen her uretha (the connecting tube) and clear the blockage which will take place at The Rosie as soon as this current situation with Coronavirus calms down. For now Ruby is just getting on with life with not a lot bothering her and I cannot thank The Sick Children’s Trust enough for their support as without Chestnut House I really don’t know how we would have coped.

Lily Tuner, Ruby’s mum

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