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Frequently Asked Questions

Over the years new parents have asked very specific questions about their babies from before they are born right through toddler-stage, to primary and secondary school. This is a goldmine of information reflecting hands-on, real life experiences and solutions which are not always by the book.

We have put together the most Frequently Asked Questions as a ready-reference for everyone touched by cleft.

For any questions not covered here… please ask below and we’ll endeavour to get you the right answer.

If you are a young person born with cleft, take a look at the part of the website that is just for you.

 

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    How do I feed my baby? Is it possible to breastfeed?

    A baby with a cleft lip can usually breastfeed. Sometimes there is difficulty in forming a seal between the breast and lip, you may need to try with your baby in different positions and seek support from an Speech Language Therapist and Lactation Consultant . Do remember that some babies without a cleft may also have difficulties breastfeeding successfully. If your baby has a cleft palate as well, it will be very difficult to successfully breastfeed. You can still express milk for your baby, giving them a great start.

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    What about bottle feeding?

    Sometimes a specialised bottle will be needed. Ask your SLT to assess which is the right bottle for your baby. They will organise a supply to be sent to you.

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    What about burping?

    Sometimes our babies take more air than other babies. Stop during the feed to burp baby. This is often a stage they grow out of.

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    How do I keep my milk supply up when expressing?

    It can take longer to establish a good milk supply when you are expressing. Keep persevering it will come. Drinking lots of fluids can help as well as getting plenty of rest.

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    How do I feed my baby after a lip and/or palate surgery?

    Ask your Cleft Team Surgeon to tell you what method of feeding they expect post surgically. Often they will require a non suck method of feeding, and it is a good idea to practise before the surgery.

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    My bottle keeps leaking.

    Check that the teat, collar and valve are put together properly. Check the temperature of the milk as sometimes if it is too hot or cold it will leak.

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    My baby drinks more than the bottle holds.

    The specialised teats fit other bottles. Get a bigger bottle from the supermarket and your teats will fit this.

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    How do we introduce solids?

    Just the same as you do for every child. Your Early Wellchild provider can assist you. Some children whether they have a cleft or not find it difficult to know what to do with solids. Give them time. Try at a settled time, relax and if it isn’t working try again later. Start off with smooth, bland food. Turning a spoon over to sit on the roof of their mouth, can help some of our children to use their tongue to move the food to their throat.

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    Did I do anything to cause the cleft?

    Nothing you did or did not do caused the cleft. Researchers believe there are many factors involved in cleft.

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    What is the chance of other babies having a cleft?

    This is a complex matter. Having a child with a cleft doesn’t mean you will have another, or if your child born with a cleft has a child that they will also have a cleft. Talk to a Geneticist who will take your family medical history and your child’s health into account to give you a clearer picture of recurrence in your family.

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    Will my baby remember the surgery?

    There is research to show that babies brains are not yet wired to perceive pain and they don’t seem to consciously remember surgery. It is part of their history and the more open and honest you are with your child as they grow up the more resilient they will be.

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    How long will it take to recover from surgery?

    Every baby is different but for the first few days most tend to be unsettled. It is temporary and each day gets better. There are usually a range of reasons that contribute to their unsettledness – they are tired, hungry and out of sorts. With pamol and ibuprofen, they should not experience any pain. Babies are resilient and bounce back quickly.

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    What should we do about name-calling?

    Acknowledge what is happening to your child and their feelings. Help them gain skills to be able to deal with name-calling.
    Go and talk to your child’s school or kindy so that you can work together

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    How do you answer your child’s questions about their difference?

    Simply and with honesty. This is part of who they are and should be a normal part of conversation. Keep your answers simple and if they want more they will ask

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    How do we respond to our other children?

    Involve them in what is happening and be honest about your feelings. Let them have their own responses and face this together as a family.

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    How do we answer questions from other people about the cleft?

    Answer questions matter of factly and simply. People are generally just curious. Congratulations you have educated another person about the condition of cleft.

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    Is it a good idea for my child to meet other children with cleft as they grow up?

    We think so. We all love to belong and ‘fit’ in. It is great to know that there is someone else out there who knows what you are experiencing.

    Cleft NZ believes it is best to give our children opportunities to meet others in a relaxed and fun atmosphere – sometimes they will hit it off and sometimes they won’t. But they will know they are not alone.

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    My child doesn’t want a procedure – what should I do?

    It is their body and they have a right to have an input into what happens. Talking it through may help you to understand why they are making the choice they are, so that you are able to address that anxiety. Giving your child some choices about where to find information may help. Refer to the Kids Only and TeensPlus sections of the website. Being honest about your feelings may help your child to understand where you are coming from. It is a skill and can be hard to allow our children to grow up but a necessary part of parenting. If you require more assistance, ask your cleft team if they have someone who can help you.

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    How do we advocate for what we need?

    It can feel like a fine line to walk being a reasonable advocate for our child. Stick to the facts and never become personal, explain your feelings and if you can, be very specific about what it is that you want to see happen, by when and how. Cleft NZ can help you with the skills you need to become a great advocate.

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    I heard there are some homeopathy oils/creams that can be applied once a cleft lip is healed from surgery to minimize the scar. Does anyone know the name of the oil/cream?

    Different people have different preferences. Cleft NZ has heard from either parents or Plastic Surgeons the following suggestions; Rosehip oil, Bio Oil and Vitamin E oil / cream. Whatever you decide, it needs applying generously for as long as everyone is willing. Remember that scars have a life cycle. They shorten over the first few months and can look redder and thicker, then they relax again.

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    Hello. Could you tell me at what age the first operation is performed after birth please?

    It depends what type of cleft your baby has been born with. Generally if the lip is involved the repair is between 3 -5 months of age. For palate repair 9-12 months of age. If your baby was born with Pierre Robin sequence, the palate repair is later between 1 yr and 15 months. For more information check out the milestones charts. https://www.cleft.org.nz/about-you/baby-family/milestone-charts/

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These questions are just a start. If you have other questions, let us know because you probably will not be the only one. We can answer your questions confidentially and add commonly asked questions to this page.

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