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Caring for babies with orofacial clefts and their families

Caring for cleft babies, mothers and their familie
Photo: Tania Green, Karen Wigg with baby Zoe and her mother
One in every 700 babies is born with orofacial clefts, a group of congenital malformations including cleft lip, cleft palate – or both. It’s one of the most common craniofacial anomalies and occurs when a baby’s lips or mouth do not form properly during pregnancy.

Babies born with orofacial clefts rely on the support of a multidisciplinary team of specialists –a cleft team – which includes doctors, surgeons, nurses, dentists and a range of allied health professionals.

Tania Green, Clinical Nurse Coordinator, Monash Health Cleft and Craniofacial Anomalies Unit, describes her work as part of an expert multidisciplinary cleft team as rewarding, heart-warming – and hard.

“I have the best job – the opportunity to work with the expert health professionals that make up the multidisciplinary teams is exciting.
“But it’s our patients and families that make my work so rewarding.

“The opportunity to meet with families enables me to advocate for their care from birth to adulthood, and the connection you establish during this time promotes the care and support we provide.”

It’s also a challenging role that requires a high degree of problem-solving, flexibility and resourcefulness to ensure favourable patient outcomes.

“The workload is high and demanding, and the hours are long. It can certainly be complex liaising within the different disciplines to advocate care needs.

“But it never ceases to amaze me how nurses can reinvent and regenerate their learning and basic care skills to advance into new horizons.

“I always wanted to work in paediatrics, and by aiming high, working hard and dreaming big – here I am!”

So, what is it about the role that makes it more than just a job? Ms Green says, like most things in life, it’s the little things that light her up.
 
“It sure is the small things that warm our hearts.

“The photos and videos from my families saying their first words, starting their first day of school, graduating from school, and even having their own babies!

“There are so many moments that I have been lucky to share, and particularly the transformation of the cleft lip repair surgery.”

Every surgery is special and unique, says Ms Green, and when parents are reunited with their baby post-operatively, it’s heart-warming.

“When they see their child for the first time following surgery – it brings tears to the eyes!”

As a prenatal cleft consultant, Ms Green also relishes her role in educating midwives to collaborate with the paediatric team to keep newborns and mothers together.

“I support the midwives by providing education and liaison, reassurance and encouragement. 

“The midwives are the experts when it comes to maternal and newborn care.

“The cleft newborn is only different in that they need specialised feeding support, and by establishing confidence in the use of the feeding tools, the midwives are empowered. 

“If the midwife is confident, this reassurance passes to the new mum, and with this positive start, families are more confident in their care.”

Karen Wigg, Midwife Manager Birth Unit, Monash Women’s, says the support of Ms Green is vital to midwives and mothers of cleft babies.

“Tania provides education in the care and management of cleft babies via in-service education sessions for midwives to support mothers and families of cleft babies,” says Ms Wigg

Mothers of cleft babies often require specific care with feeding.

“This can be a traumatic time for parents, as many may not have had a cleft diagnosis prior to birth.

“One of the most immediate concerns for most mothers is how they can manage to feed their baby.

“Clefts often make breastfeeding difficult or not possible at all, and the use of specialised feeding bottles necessary.

“For those wishing to feed their baby breastmilk, it can be an extremely time-consuming process of expressing and bottle feeding alongside all the usual needs of a newborn,” says Ms Wigg.

Ms Green’s support is two-fold, educating midwives with knowledge specific to feeding babies with clefts and directly supporting mothers.

“Tania will come personally to see cleft babies and mums, discuss future implications, ongoing care and surgeries, and assist midwives on the ward to provide extra care if needed.”

As a grandmother to baby Zoe, who was born with cleft lip, Ms Wigg can also relate to these families on a personal level.

“My daughter [Jess] received the news her baby had clefts at her routine 20-week ultrasound – alone, due to COVID restrictions.”

When cleft is an antenatal diagnosis, the cleft team provide education and resources to help families make informed decisions before birth.

“This arms them with knowledge of the condition and what baby’s future health needs and potential surgeries might be.

“Tania also visited Jess within hours of birth and again several times a day throughout her stay.

“She also provided vital support and education to the midwives, which ultimately kept mum and bub together on the ward.

“Many of the midwives commented how empowered they felt and how different care for future patients could be.”

Baby Zoe will have the first of several surgeries in the coming months. But with the support of Ms Green and the Monash cleft team, Ms Wiggs isn’t worried.

“I feel comfortable knowing Zoe is in such wonderful hands!”

CleftPALS, a group of parents and cleft affected adult volunteers, also provides crucial support for parents and families of cleft babies, says Ms Green.

“They are integral to the support and advice network and strongly complement the Monash cleft team.

“This partnership with CleftPALS strengthens connections with the hospital teams, demystifies treatment pathways and medical jargon and provides a service that meets the complex needs required.”

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Haley Williams

Haley Williams has a Bachelor of Communication in Journalism and over a decade of experience in the media, marketing and communications industries.

She is a widely published journalist with a particular interest in writing magazine features on parenting, health, fitness, nutrition and education.

Before becoming a freelance journalist, Haley worked as a writer for NeoLife (a worldwide nutrition company), News Limited and APN News & Media.

Haley also has extensive experience as an SEO Content Writer and Digital Marketing Strategist.