Jane Sibley

Jane Sibley (2)Interface Uganda role: Volunteer, Friend, Specialist nurse.

Job: Specialist Cleft Lip and Palate Nurse at The John Radcliffe Hospital, Oxford.

I trained as a Registered General Nurse at The John Radcliffe Hospital in Oxford qualifying in 1991, swiftly followed by a post graduate course to become a Registered Sick Children’s Nurse at Great Ormond Street Hospital, that I completed in 1994.

My interest in working with children and families affected by cleft was born whilst working with Tim Goodacre in Oxford in the early 1990s.  At first I worked as a cleft ‘link’ nurse alongside my work as a staff nurse on the children’s ward with the inpatients. Over the following years the role developed and I became a Cleft Lip and Palate Nurse Specialist working with Tim and the rest of the cleft team.

In 2008, it was with great excitement that I first visited Andrew and Sarah as part of a team trip out organised by Tim.  At the time the surgery was carried out at Mengo Hospital and the outpatients at Katalemwa. I came away feeling passionate about the cleft care they delivered and was bowled over by the openness of the Ugandan families that I had met along the way.

A few years later Marc Swan joined the team alongside Tim and the rest of us in Oxford as our Cleft Surgeon. Being around both Tim and Marc has kept my interest in cleft care in Uganda alive and in 2016, I was privileged to be invited back to Uganda for a second time. This was my first visit to CoRSU. It was great to be able to accompany Marc on his planned visit and to stay with Andrew and Sarah again. This time, I had a more specific task in mind. I was to work with the nutrition team and the ward nurses, sharing with them my specialist knowledge about feeding and post-operative care of babies and children with clefts. I had the most amazing time working with the team and was made extremely welcome. It was such a privilege to work with the team at CoRSU.

Since my return to the UK, I have continued to stay in touch with the nutrition team, in particular, Bertha who is the head nutritionist at CoRSU. Bertha sends me regular photographs and snippets of information about progress of the babies that use the soft bottles and teats. The main thing is that her patients seem to be putting on weight more quickly by using these bottles.  Under Bertha’s guidance the babies also seem to be discharged home from hospital more quickly when they are on the nutrition programme and are a good healthy weight for their surgery which means they will recover more quickly. She has recently filled in the questionnaire for us, illustrating the success of the bottles using 3 case histories.

During the past year, we have organised another shipment of bottles and teats to go out. On Bertha’s advice, we have adjusted the bottles and teats to suit the specific needs of the Ugandan mothers.

I am hoping to go out to CoRSU to visit Bertha and the nutrition team again in 2018. This will be a great opportunity to see how the bottles and teats are working for her and to continue to share my knowledge in more detail about feeding babies with a cleft. Bertha has also made a specific request that we discuss her syndromic cases and do some teaching around these. This will be great to share with the nurses on the ward too.  That has certainly left me with plenty of food for thought………