The right to a smile

Jackie Matthews is a Clinical Nurse Specialist in Cleft for the NHS in the South Thames Cleft Services, which is part of Guys and St Thomas. She discusses her volunteer work with Operation Smile, helping provide essential care for people with cleft lip and cleft palate.

Jackie has attended six surgical programmes herself, in countries including Dominican Republic, Malawi and Mexico. She shares some moving memories. “We brought the patient into the recovery room, and the mom was so excited to see the child, she actually did a roly poly down the centre of the of the recovery room. She was just she was just beside herself with excitement. So that was that was memorable. The care we give makes a difference to the individual and their family, but also to those of us who volunteer. We always get far more back from a programme than we ever give.”

“On my very first surgical programme, we were doing the screening and there was a lovely mum with a two-year-old who having his lip repaired. She was telling me that she was due to get married and fell pregnant. When her husband to be realised that the baby had a cleft lip, he left. So she was a single mum and on her own. She was a huge advocate for her son, but that resonated with me, certainly. The burden of care is often on the woman. It’s usually the mums who come in for the screenings.”

“Sometimes the older patients who have spent their whole adult life looking very difficult. They often have very misaligned teeth, and speaking can be a challenge. There’s such a lot of stigma involved that they, they often don’t fit in with their community. So they’re very isolated. Then we get to do this surgery on adult patients and really transform the way they look and how they feel about themselves, which almost seems to me more powerful than when we operate on a baby. This simple, straightforward operation can just transform their lives.”

“In the UK, we look after babies who have cleft lip or cleft palate picked up on a scan before they are born. We also support their parents right from that early stage. We provide psychological care, and practical support too. There is a 20-year pathway in the UK, from that initial assessment, to meeting the baby for the first time, providing feeding support, and through every surgery. We provide specialist orthodontic treatment, and speech and language advice. In adulthood, we can offer certain plastic surgery as well. So in the UK, we have a very robust system of supporting our babies and their families as they grow.”

In lower income countries, Jackie explains that this support isn’t always provided. “Often parents will not have any kind of pre or antenatal support. There is no preparation for families. For babies born with cleft conditions, one of the biggest issues is feeding. And there can be a huge stigma in communities. There are transferable skills from the UK to educate and empower, and ensure families receive early intervention. It is my passion to help people get the information, support and practical advice they need. I’m currently working with teams in sub-Saharan Africa to help educate people to understand what a cleft lip and cleft palate is, and how we can fix it.”

If not treated, infants born with cleft conditions have nine times the risk of dying within the first year of life. They may be rejected by their families or communities. They may be unable to feed or have problems speaking due to the hole in the roof of their mouth. £150 helps one child receive the help they need.

Looking to provide her invaluable support to those who need it, Jackie started to volunteer with Operation Smile in 2011. “I began researching some charities. I immediately liked Operation Smile as they had a very inclusive approach to the care they give.”

In the years Jackie has volunteered with Operation Smile, the charity has changed the way they provide essential care. “The charity aims to upskill and train people in the countries they provide support in, to ensure that healthcare providers in the country can look after their own patients. Rather than parachuting in and leaving ahead, there has been a huge investment in education and training. There is also a really strong movement for students. Its’s been a powerful thing to watch develop.”

For more information, visit: www.operationsmile.org.uk/fundraise

ENDS

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