Northern Ireland Chest Heart & Stroke
Baby Joe’s Story

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On the 16th of August 2013, Kerri and William Degnan from Larne took the most frightening journey of their lives. Their two–day–old baby, Joe, who was born with a congenital heart defect, was travelling in an air ambulance to Birmingham for life–saving surgery while they followed on a scheduled flight.

Joe had a condition known as double inlet left ventricle. Affected babies suffer a lack of oxygen to their blood and major organs. The resulting breathlessness also makes it difficult for them to feed.

Several days after arriving in Birmingham, Joe had his operation. It would be five hours before his parents would see him again. Kerri describes the waiting as “agony.” Finally they were told that he had survived the surgery.

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But Joe’s problems were not over yet. After his operation, he was still having difficulty breathing. A build–up of fluid was putting pressure on his heart and lungs. This caused his body to swell to such an extent that his eyes were swollen shut. He remained in a critical condition for two weeks. He then had to undergo a second surgical procedure to close his chest. It had been left open because his tiny body would not have accommodated his swollen heart after the original operation.

Still his problems continued. He was placed on a ventilator delivering pure oxygen, but his skin remained grey. Finally, he was connected to a machine that helped strengthen his lungs. William recalls having to adjust the face mask constantly to ensure that it created a proper seal. At this point, say William and Kerri: “We were living minute to minute, hour by hour. The whole experience was hard, completely life changing and very humbling. We are different people now, and have altered the way we express our emotions.”

Even when Joe was finally allowed home, it took time to adjust. Kerri was afraid to hold him in case she hurt him. But she says: “Joe teaches us something every day. Each day I care for him, I learn how to be a better person.”

It took a whole team of NHS staff to save Joe’s life – a team to whom Kerri and William will be forever grateful. They also received huge support from their family and friends, and from William’s boss at work.

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