Often, babies born with cleft lip or a cleft palate have difficulties with eating, breathing and speaking due to their facial difference. Before cleft treatment, the split in their lip and/or mouth may affect the normal action of sucking that is vital for feeding. Even after cleft surgery, post-surgical complications may make feeding a baby with a cleft challenging. As a result, children with clefts frequently require specialised nutritional support before they are physically able to receive cleft surgery as well as after surgery to ensure the best possible opportunity for successful rehabilitation.
To mark Cleft Lip and Palate Awareness Week Susannah Schaefer, President and CEO of Smile Train, has shared some information and tips* on how families can look to nourish children with clefts, so that they can go on to live healthy and productive lives.
One of the most critical challenges faced by parents whose child has been born with a cleft is difficulty in feeding. Before cleft treatment, the split in the lip and/or mouth may affect the normal action of sucking or swallowing that is vital for feeding.
A number of feeding approaches are available to these parents, but some trial and error may be necessary in finding the method that works best. For example:
Breastfeeding & bonding
‘Bonding’ is an emotional and psychological process based on the love, trust and interdependency that takes place between a parent and their child. Breastfeeding has been viewed as especially important in facilitating bonding.
Some babies with clefts will have difficulty breastfeeding, because they will not have the ability to suckle sufficiently to breastfeed. If a family has made a commitment to breastfeed their child, the presence of the child’s cleft should not deter them from trying – as it can be possible with some practice and perseverance.
However, it’s important for parents to know that successful, effective bonding is not necessarily dependent on breastfeeding and can take place when other methods of feeding are used. The important thing is that the child is held often and nurtured – so if breastfeeding isn’t an option, bonding is still achievable.
Much like with breastfeeding, the opening between the mouth and the nose can create difficulty for infants with clefts when trying to bottle feed. Parents may find that their baby struggles to create the necessary suction that is needed to pull milk from the bottle, or they may experience “nasal regurgitation” which is where the milk comes out of the baby’s nose during feeding.
Parents should try feeding the baby in a more upright position, as this may help to prevent nasal regurgitation. Other options include using specialty feeding bottles or bottle liners to control the flow of the milk when it comes out of the bottle. These liners collapse like a breast to prevent the baby from swallowing too much air.
Surprisingly, not many children with a cleft lip and/or palate have long-term problems with eating purees or table foods using a spoon. If the child consistently rejects the idea of spoon feeding or cup drinking, they are probably not developmentally prepared to take that step yet – so discontinue and try again in a few weeks’ time when they are ready.
Once the cleft has been surgically treated, any issues with mealtimes should gradually start to lessen. Sometimes after surgery, a small hole (called a fistula) may remain or develop in the roof of the mouth, and food or liquid may become lodged here – however, most children become very adept at clearing this on their own.
In some areas around the world, parents do not have access to the expertise or resources needed to support them with their child’s nourishment – which is why, at Smile Train, we have established our special Nutrition Grants programmes. Through these programmes, families are shown how to properly feed their child and adhere to sanitisation guidelines by local health professionals. This ensures that these children are strong enough to safely and successfully undergo cleft care treatment.
We also work hand-in-hand with hospitals and social workers in local communities, to increase awareness and ensure that families are given the right information to keep their child healthy.
Take the story of Baby Isaac as an example. Isaac was born in Kenya in the Maasai Mara with a cleft lip and a cleft palate. Because of his clefts he was unable to eat properly, which led him to be malnourished.
When our local partners met Isaac at just three months old, he weighed only 2.4 kilos. The fontanelle on his head was depressed, indicating dehydration. He was very small and very weak.
Isaac’s mum did not have enough breast milk to feed him. His family had recently gone to a local health clinic on the Maasai Mara and were given a can of infant formula; however, they did not have enough money for fuel to boil the water needed for the formula.
After that formula eventually ran out, his mother had even less milk and his family could not afford to buy another can. When Isaac was given milk, he was ravenous. Not a single drop fell from his mouth. You could see he was starving.
Thankfully, Isaac was able to be helped through our Nutrition Grants programme. After receiving the proper nutritional support and care he needed, he received his cleft surgery on November 27, 2018 at the Bethany Kids Hospital in Kijabe – and was discharged two days later with his new forever smile.”
Smile Train is helping people like Isaac, by empowering local medical professionals with the training, funding, and resources needed to provide 100% free cleft surgery and comprehensive cleft care to children globally – giving them the power of a brand new, forever smile and the opportunity to live healthy and productive lives.
The charity’s Medical Advisory Board (MAB) is comprised of experts from all over the world and plays a vital role in helping the charity to ensure that its cleft care programmes are safe, high-quality and comprehensive so that all its beneficiaries receive the greatest level of care and support.
MAB member Dr Peter Mossey said: For three decades, I have dedicated my life to academia and my research to cleft lip and palate (causes and treatment).
“I admire Smile Train for its ethos, caring philosophy and strategic approach to the care of infants born with CLP around the world, and their actions have been transformative at individual, societal and global levels.
“Working with Smile Train will help me achieve some personal ambitions in this field but most importantly, I trust that it will lead to reduced mortality and better care for infants born with clefts and lead to new innovations in treatment and prevention in due course”.
For more information about Smile Train’s Nutrition Grants programmes, or to donate to the charity during National Nutrition Month in March, visit SmileTrain.org.uk.
*Please note – The above commentary and information does not constitute medical advice and readers should always consult a medical professional with any questions related to their health.