Ultrasound scans form part of the routine care for an expectant mother and her baby and can occur at various times throughout the pregnancy. Diagnosis of a cleft condition during routine ultrasound is often the way parents learn of their child’s condition.

Any diagnosis can be worrying for parents. It is normal to feel a range of emotions from grief, shock, fear, anger and disappointment along with the joy of anticipating and welcoming a new baby. Accurate information and support is the key to gaining the perspective needed to deal with the challenges ahead. You are not alone. Cleft lip and cleft palate affect around 1 in every 600 – 700 babies in Australia and this number is higher in some countries.

By the time a baby is around 20 weeks’ gestation, it can be possible to detect the presence of a cleft lip. Cleft palate is harder to detect on 2D ultrasound but may be suspected. This can be confirmed by a more detailed 4 dimensional scan or MRI, but accurate diagnosis is often not completed until after baby is born.

It is up to parents to decide if they need a more accurate picture of the baby’s face and scull by having a 4D scan.

It is important to remember ultrasound is not 100% accurate and some children may be born with a cleft that has not been diagnosed on a scan. Please note that this is not due to any lack of skill by the sonographer or technology at the time.

Many parents feel that it is important to prepare themselves and understand what can be involved with cleft conditions before their baby arrives.

Where to next?
When you learn of your baby’s condition, you may have many questions. Write them down and ask your doctor, or phone or email CleftPALS QLD for more information to help you prepare for what lies ahead.

A contact parent can provide you with support and the opportunity to talk to someone who has been through similar experiences. Connecting with other parents via the CleftPALS QLD public page or private group on Facebook has also been helpful for many parents. CleftPALS QLD also hosts events where you can attend and meet other new families, as well as families who have already been supported by CleftPALS QLD. These events are held in a friendly and relaxed environment, often at a park or a venue that is child-friendly.

Feeding Equipment
You will need to have feeding equipment for when your baby arrives, even if you hope to breastfeed. This is available for purchase from CleftPALS QLD by either emailing or phoning to place an order. Items are mailed out to you, are available at events or from a contact parent. Babies with a cleft lip only may be able to breastfeed under the supervision of a health professional, however, over time you may need to have a squeeze bottle to assist with extra feeds in addition to breastfeeding and to use with post op feeding equipment if required.

With the right equipment and feeding technique, along with practice and dedication, your baby will thrive like any other baby. Clefts can also occur as part of a more complex condition (syndrome). If a syndrome is involved, a geneticist can assist with information and advice.

Please note, there is no “cure” for a cleft. Management and treatment will ensure your child’s health and wellbeing. As your child grows and changes, interventions may be necessary to correct features like teeth, lip, jaw, hearing and speech.

Professional Support
You will have a group of healthcare professionals who will assist you and your child after your child’s birth and for years to come. They will include:
Plastic Surgeon – repairs the tissue or the lip, nose and palate.
Orthodontist – may create a plate and provide devices to help with feeding and preparation for surgery, manage the teeth and oral care.
Speech Pathologist – advice on feeding and swallowing in the early years and assistance with eating and speaking.
Ear, Nose and Throat Specialist – will help manage conditions commonly associated with a cleft such as hearing loss or glue ear.

 

What to expect at Birth
Your baby is not unwell and will be able to be delivered in the same way as if they were born without a cleft condition. There is no medical reason why a child with a cleft lip or cleft palate should be delivered differently.

When your baby finally arrives, it is not uncommon for a newborn with a cleft condition to be transferred to special care. Feeding your baby will usually involve using the specialised bottles and teats which are purchased from CleftPALS QLD. Children with a cleft lip only may be able to breastfeed. Mothers will often express breast milk or opt for formula feeding. There is no judgement by CleftPALS QLD in regard to how you choose to feed your baby. Each cleft is different, just as every mum and baby is different. We will work alongside you and your health professionals to help establish a technique that works for you and your baby. We are here to support you with feeding with whatever you choose to be right for you and your child.

It is not usually necessary for a newborn with a cleft condition to need to have a feeding or breathing tube unless there is a specific problem e.g. Pierre Robin Sequence with airways issues or other conditions.

 

For more information about other cleft related issues:
Phone: 1300 362 056
Web: www.cleftpalsqld.org.au
Email: support@cleftpalsqld.org.au