If I got a phone call to say I needed to go down to the ward it would take just two minutes
My baby boy Kyan was born on 26 February 2021 and everything was fine. His birth was straightforward, but as the first few weeks of his life progressed I thought that he didn’t seem right. He was feeding, but frequently being sick and sometimes there was blood in it.
By the time he was six weeks old I was quite worried. I took him to two different hospitals and both thought that Kyan was just suffering from acid reflux. I simply didn’t believe it and knew in my heart of hearts this was something else.
We were in the process of doctors appointments and tests to try to figure out what was going on. We had an ultrasound which revealed Kyan had pyloric stenosis, a condition where food is blocked from entering the small intestine. It’s quite uncommon in infants, but my brother had it too so I suspected it could be this from Kyan’s first symptoms.
Kyan deteriorated rapidly and the day after his diagnosis I had to call an ambulance because I couldn’t stop him from being sick. We were taken to Great Ormond Street Hospital and Kyan needed to have a keyhole surgery so that he could digest food properly. However, he was dehydrated and the doctors were concerned about the results of his bloodwork so he couldn’t have the surgery straight away. We were put into the High Dependency Unit (HDU) while Kyan was getting strong enough for surgery.
There wasn’t anywhere for me to sleep. The nurses recommended that I go home to get some rest, but we live an hour and a half away in Hertfordshire and I couldn’t leave my six-week-old baby alone. I didn’t really know how I was going to stay close by, so it was a huge relief when I found out about The Sick Children’s Trust’s ‘Home from Home’ Rainbow House.
Rainbow House is just a few minutes’ walk from the hospital and at first, I was very nervous about staying there – I was in a strange city and I was so stressed about Kyan. The House Manager was lovely though and she showed me around the kitchen, living room and my bedroom. There was also a phone in my room, which made me feel so much better. If I got a phone call to say I needed to go down to the ward (which I did one morning – at 6AM), instead of taking me two hours to get to Kyan, it would take just two minutes.
Without The Sick Children’s Trust I don’t know what I would have done. I certainly wouldn’t have had a good night’s sleep. I only stayed in the ‘Home from Home’ for four nights but it really helped me a lot. It was such a difficult time, but at least I didn’t have to worry about how I was going to stay by my little one.
The operation went brilliantly and I’m pleased that we’re back at home with Kyan’s dad and brother. Now it’s over and done with, Kyan is a happy and healthy baby.
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