Every child needs to be heard

Speech therapy gives children a voice

Imagine if you couldn’t express yourself. If you weren’t able to speak the words needed to share your feelings, or to ask for the things you needed. Imagine how frustrated and isolated you’d feel?

We often take our ability to communicate for granted, but for children with a cleft palate, forming the sounds we need for speech is a struggle. Thankfully, volunteer speech and language therapists like Erika Bostock are helping to ensure children with cleft conditions have a voice.

Speech and language therapy plays a vital role in the comprehensive cleft care we strive to provide to our patients. Around half of children born with a cleft palate will need support with learning to speak and benefit greatly from specialist help before, and after surgery.

Fighting malnutrition

Many children with a cleft palate struggle with breastfeeding or even drinking milk from a bottle. This is because the cleft causes a gap in the soft tissue that forms the roof of the mouth, or palate. As a result, malnutrition is a very real concern for babies living with untreated cleft conditions. Working alongside our nutrition teams, speech and language therapists like Erika can advise on feeding techniques to ensure children can get the vital nourishment they need to stay healthy and get strong enough for surgery. 

During a surgical programme in Madagascar Erika saw firsthand the prevalence of malnutrition among children with cleft conditions, many of whom were too weak to be cleared for surgery. She recalls:

“We started offering nutrition advice and guidance to the mums. When we returned a couple of years later, one of the mums came up to me with her child and said, “You gave me advice on how to feed my child and she’s had surgery now.” It was just amazing to know that I really could make a difference like that. And possibly save a child’s life.”

Vital support during surgical programmes

Erika’s been working as a speech and language therapist since 1995. In her day job she works in South Africa in a public sector hospital, but she’s volunteered on over 20 Operation Smile surgical programmes, all over the world. Her involvement in a typical programme starts during patient screening where she identifies patients who have had cleft surgery and who are experiencing residual speech difficulties. She explains:

“Depending on which programme it is, which country I’m in, I will either arrange individual follow up for patients with speech problems through a home visit or ask for them to come back to the hospital during the programme so that I can see them.

“If it’s a big group of patients with similar problems and they don’t need individual one-on-one intervention but just guidance, like those feeding difficulties, or children with language delays, I’ll do a group talk on nutrition, or language stimulation methods and explain how important it is to stimulate their language.”

During the programme, Erika also works with the orthodontist to assist with the fitting of obturators. An obturator is a prosthetic palate fitted to cover the gap in the roof of a child’s mouth to help them feed properly.

Building trust with patients and families

Like all of our medical volunteers, Erika works hard to build a rapport with her patients and is a reassuring presence for worried families, many of whom may be fearful of the hospital environment. She says:

“I find that parents are usually so anxious before the surgery, that anything you say to them goes in one ear and out the other, but once they’ve had the surgery, they’re much more receptive to anything you might want to tell them about speech. I talk about to them about the importance of speech correction and returning for follow up treatment if their children are still having residual speech issues after the surgery has healed.”

Why volunteering means so much

Erika wanted to volunteer for Operation Smile so that she could use her skills to change the lives of children struggling with cleft conditions. She tells us:

“I wanted something different. I wanted a way of making an impact on the world. Not in a huge way, but just impacting on people’s lives. I wanted to learn about health systems in other countries. Operation Smile seemed like a really great way to meet that need and it has been wonderful. I really can make a difference. My time is appreciated and valued. That’s hugely rewarding for me.”

Speech therapy often an undervalued specialty

Erika is keen to see speech therapy more widely recognised across the world. She is passionate about language and the importance of being able to express ourselves. She says:

“Communication really is what makes us human.  I know so often parents focus on physical abilities and being able to be physically independent, but that misses out the whole humanity of someone, because who we are is who we communicate ourselves to be. Our wishes and our desires, our preferences and our thoughts. If we can’t communicate those, it takes away our humanity.”

As a woman in the medical profession, Erika is positive about the increase of females in previously male dominated fields like surgery and anesthesia but feels that the nursing and other more typically female-dominated professions are undervalued.  In Sub-Saharan Africa, she has been working on a project since 2016 to engage with other speech therapists as a means of assessing the numbers currently practicing in the region. She explains:

“In the 24 countries we’ve worked in, which includes the islands Mauritius, Madagascar and Comoros, I have connected with just over 300 speech therapists. When you think that there are 3000 in South Africa, it really puts it into perspective. I would be very surprised if the rest of Africa has in total, as many as we have in South Africa, which is quite scary. Considering that South Africa is not overly endowed with speech therapists even to meet our own needs. It’s a very small professional community and the number includes audiologists as well.”

In an attempt to tackle this shortage of speech therapists, Erika joined two colleagues from Operation Smile’s International Education Committee in Ghana in May 2022. The workshop-based training focused on coaching trainee speech therapists to teach parents and other healthcare colleagues how to do language stimulation at home. Erika tells us:

“Language is so culture-specific and parenting styles vary culturally too, as well as the norms of communication and who takes care of the children. We needed to do a little bit of background, getting a feel for the country and the culture there. Then we did the three-day workshop on how to teach other people, healthcare workers how to do language stimulation. Teaching them how to educate people about clefts. We did quite a bit of training around cleft and the implications of cleft for children and their communication skills. Also, on the social implications of cleft conditions and the stigma these children experience because of the way they look or sound.”

Erika still keeps in touch with the 13 speech therapists she worked with in Ghana and plans a follow-up visit soon to take their knowledge to the next level.

Quality of life matters

Speech therapy plays an important role in a patient’s recovery after their cleft palate is repaired and Erika is clear about the impact of effective rehabilitation on a child’s future. She says:

“Everyone always talks about doctors. But rehabilitation is vastly undervalued. We always say, doctors give you quantity of life, but it’s rehab that gives you quality of life. That makes a huge difference. Is quantity of life actually what you want or is it really quality of life? I think because the whole idea of quality of life is so difficult to measure, it’s not given the importance it deserves.”

There is no doubt about the immense psychological burden caused by living with an untreated cleft condition. Beyond the challenges a child faces with the difference in their physical appearance, the impact of being unable to be ‘heard’ in their lives should not be overlooked. We should all take our hats off to volunteer speech therapists like Erika, for helping to ensure a better quality of life for our patients after surgery.