Reuben B's quilt    (Quilt Completed)

Thank you

Thank you so much to everyone who contributed to Reuben's quilt. He is in love with it and can't wait to take it to bed tonight. He is amazed with the detail and how far the squares have travelled!

Finished photos

Individual squares

Card

Stitched by: Beth Filmer

Biography

When Reuben was born everything appeared ok until we came to feed him. He wouldn't suck and the milk just pooled in his mouth. He suddenly went grey/blue and needed attention quickly. A team of doctors and midwives worked on him for a while then everything seemed to be ok again. The midwife decided to try to feed him herself to see what happened and the same happened again but this time it took longer working on him to get him stable. He was rushed to the neonatal unit for further investigation. Later that day he was diagnosed with tracheo-oesophageal fistula with oesophageal atresia. He was born unable to swallow so the milk had been overflowing to his trachea and his lungs were full of milk. They also said they were sure he had a hole in his heart too. He was transferred to a specialist childrens hospital an hour away. Once there his diagnosis was confirmed and we were told he would need major life saving surgery at a day old. The following day he received the surgery to cut the bottom of the pouch and the oesophagus away from the trachea then join them together to form an oesophagus that went from his throat to stomach. The surgery was very difficult due to the size of him and the distance between the two ends of his oesophagus. This left a very tight join and narrow oesophagus. Also in surgery his phrenic nerve had been damaged so his lung later collapsed and he needed a 2nd chest drain. He had many more scary moments as he spent 7 weeks in intensive care. He required oxygen and continued to not be able to be fed orally so continued being tube fed. He went back to theatre often to have his oesophagus dilated where the scar tissue shrank and caused him to choke on his own saliva. Once on the ward he spend a further 4/5 weeks going backwards and forwards to theatre and struggling to eat. Whilst in hospital a cardiologist was visiting from the children's heart unit where they put him on medication until they could see him properly after his discharge from hospital.
Once we got him home it was time to focus on his heart and at 5 months old we took him for an ecg and echo. This is when we were told he had 4 problems with his heart and he would require open heart surgery to correct them. At 7 months old he had his surgery and as far as we knew it went well and his heart would recover and be like a healthy heart. We had regular checkups in the first few years then went to yearly checkups. Everything seemed fine until last year when they found that the pulmonary stenosis has returned and he will require open heart surgery again in the near future.
After his heart surgery, Reuben struggled with reflux and continued to not take anything orally so it was decided he would have keyhole surgery to do a fundoplication to help with the reflux and they would do a dilatation and put a gastrostomy in as well at the same time. As Reuben grows his scar tissue in his oesophagus doesn't grow with him so he has regular check ups with his surgeon and continued dilatations to stretch the scar tissue. He also requires MRI scans to monitor his heart. To date he has had 28 general anaesthetics and hundreds of other procedures.