The feeding of the cleft child can be challenging and has to be done in a specific way. Feeding a child has many benefits. It provides them with nourishment for their development, encourages mother-child bonding and also the child exercises the oral muscles and tongue. The active movement of the muscles will help in feeding, eating and speech production as the child grows. Parents need to be aware and trained in feeding a child with cleft lip/palate as the child may suffer from various problems like malnutrition, excessive air intake, choking, nasal regurgitation, respiratory and nasal diseases and even possibility of death due to aspiration while feeding.
Sounderic has created a list of FAQs that will not only give you a head start but also guide you to what Feeding for children with Cleft Lip and/or Palate might be like.
1. Why does a baby with cleft lip/palate have a feeding problem?
A baby born with cleft lip and palate, or cleft palate only, has an opening in the roof of her mouth - between the mouth and nose. This prevents the baby from making the suction or vacuum, which is needed to pull milk from the nipple. As a result, even though a baby with a cleft has normal sucking and swallowing reflexes, they need special bottles and nipples to allow the formula to flow without the help of adequate suction. During feeding, the formula may come out of the baby’s nose. This is called “nasal regurgitation”. The baby may also swallow too much air while feeding. The feeding goal is to help the baby get the right amount of milk in the right amount of time and avoid taking in too much air. Also, making sure that the baby is gaining weight.
2. How do I feed my newborn with a cleft lip/cleft palate?
A child with a cleft lip has their oral structures intact. Therefore, usually, they do not have a lot of difficulties while feeding. A parent can close both the sections of the lip by bringing it together so the child will be able to create suction while they are nursing or feeding.
For a child with a cleft palate, it is more difficult because they are not able to create that suction because all the air is coming out of their nose.
Strategies for feeding a baby with cleft lip/or palate
1. Always place the baby in an upright position, whether they are feeding on the breast or a bottle. This helps to prevent the milk/formula that the baby is drinking to not go up into his nasal cavity.
2. While the baby is feeding, look and listen for a suck- swallow pattern followed by a breath. Most babies figure out this process and develop their own rhythm of sucking, swallowing and resting.
3. Position the nipple in the baby’s mouth away from the cleft. The baby will eventually move the nipple into the most comfortable position. Keep the bottle tilted so the nipple is always filled with milk. Give a pacifier to the baby as that will help them in learning how to create suction when they’re feeding on a bottle or a nipple.
4. If some milk or formula comes out of the baby’s nose, do not panic. Instead, keep the baby in an upright position. This will reduce the amount of milk coming through the nose. Baby might sneeze or cough to clear the nose. After every meal clean the baby’s mouth and nose with a soft, damp cloth to avoid any dental decay.
5. A baby with a cleft is taking in so much air because of the hole in their mouth and therefore needs to be burped every five minutes. Sometimes the baby may fall asleep during feeding and the mother may feel that the baby has taken enough milk. However, the baby sleeps because of exhaustion due to continuous efforts of suckling and the presence of a lot of air which is now in his stomach.
6. Keep your baby upright or seated for 20-30 minutes after each meal. This will avoid anything coming out of the child’s nose. If they are lying down with all that liquid in the mouth that might cause aspiration, they may choke.
7. Keep the feeding time short about 30 minutes or less, feed your baby in small and frequent doses. Babies get exhausted by working so hard to create that pressure to drink and burn up too many calories that the baby needs for growing. so you want to make sure that the feedings are short and you do it often throughout the day as they are not taking enough milk as compared to the other child.
3. What are the stress signs that you need to look for while feeding your child?
While you are feeding your child please be cautious of the signs your baby is giving you of discomfort. Make sure your baby isn't feeling uncomfortable. Periodically stop and check your baby, help him burp. Signs that they’re not feeling comfortable during feeding are-
Coughing during feeding
Choking during the meal or
Kicking his legs
Arms and legs stretched wide
Breathing fast or difficulty in breathing
Bringing their fingers to mouth,
If your baby shows these stress signs give him a break when he looks ready to start again. However, if these continue then bring them to the doctor to check what’s wrong with their feeding.
4. What modifications can we use to feed our child?
It is important to maintain the nutrition of the child and finding a feeding technique that is as close to normal as possible and also maximizes stimulation. These movements facilitate oral motor development. These children are able to swallow normally but have difficulties in sucking.
Keeping the baby at the breast helps preserve the mother-baby bond that only breastfeeding can create.
If the child is not able to breastfeed then you may use a speciality cleft palate feeding bottle.
Infants with varying degree of feeding problems due to cleft lip and palate can benefit from the use of specialized feeding equipment. These specialized feeding devices are designed to overcome circumstances and have successful feeding.
There are special feeding products like
Dr. Brown’s Specialty Feeder
Pigeon Nipple
Medela Special Needs Feeder
The Mead Johnson Cleft Palate Nurser, etc
Here, is a video describing different feeding bottles that you can use to feed your baby.
If the parent doesn't have access to this type of bottle, you can modify the bottle and nipple.
You can boil both the bottle and the nipple, to make it softer for the child. A soft plastic bottle which will give the feeding person an excellent control over the amount of milk delivered into the infant's mouth is very useful in this situation. This way the bottle gets sterilized and the child won’t develop any infections. This helps the parent in squeezing the bottle to help the child express the milk. Also, if the nipple is softer, it'll be easier for the child to express the milk from the nipple.
If the baby is still having a hard time expressing milk from the nipple, you can also modify the nipple by making an "X" on the nipple, so that the hole is a little bit bigger and the child will be able to take in more milk from the nipple.
But, be careful when making an "X", because it may rip, and then after a while, they may be taking in more liquid than they can actually handle. So, you may need to replace that nipple and do it over again.
The traditional methods of feeding are spoon-feeding. There are modified cup feeding devices ex baby cup feeder, soft feeder.
5. Is there a positioning technique for bottle feeding?
Yes, there is a technique to feed your baby. Try and wrap your infant in a blanket enclosing his hands.
Sit in a comfortable chair and hold the baby upright in your arms.
Place the nipple gently into the baby's mouth and lay it on top of his tongue.
Rotate your arm so that the underside of your hand is holding the bottle. Put your ring finger under the baby's chin.
With firm pressure, keep your ring finger in place so as the baby suckles you feel pressure against your finger. Your infant should feel comfortable while suckling (i.e., no straining or squirming to access the nipple or to swallow).
If your infant has both a cleft lip and a cleft palate, position the nipple so that his upper and lower gums connect with it.
With gentle pressure under the chin, push up to start your baby's sucking.
Maintain this pressure. If, after a minute of sucking, there is little flow of milk, rotate the nipple to a long line or compress the nipple with gentle pressure in rhythm with your baby's suck-swallow reflex.
Watch for cues that your infant is either satiated or needs burping (“bubbling”).
6. Are there ways to supplement or replace oral feeding?
Our first priority is that the baby should gain sufficient weight so that he/she is ready for the surgical procedures ahead. Sometimes because of the severity of the cleft lip and palate, the baby is unable to gain sufficient calories through oral feeding. This difficulty can be overcome by feeding the baby through a nasogastric tube.
A nasogastric tube is passed through the baby's nostril into his stomach to provide nutrition. If the baby has trouble with both eating and breathing, the doctor may recommend a gastrostomy tube (PEG tube), which is placed directly into his stomach from the outside of the belly under general anaesthesia. The food source is delivered to the stomach through a syringe.
Both of these tubes are temporary solutions until the child is ready to eat orally.
7. How long can I let my baby sleep between feedings?
It is sufficient for infants to sleep for 3-4 hours between feedings in the first weeks of life. If the baby is receiving breast milk, more frequent feeds may be needed, because breast milk is more quickly digested than formula. Once adequate fluid volumes and weight gain are achieved, the schedule can be relaxed to an on-demand feeding schedule.
8. How can I enjoy the feeding process if my baby isn’t breastfeeding?
Breast milk helps your baby in many ways. It:
• Strengthens health before surgery and aids recovery afterwards
• Provides protection against infection
• Is easily digested and provides many nutritional benefits
Learning that breastfeeding is an unlikely option can be a source of disappointment and sadness for some families.
But you can still share many benefits of breastfeeding with your child:
• You can express breast milk with a pump, but feed your baby with one of the bottle-feeding methods or a cup and spoon.
• During feedings, make sure that you both enjoy eye-to-eye, and skin-to-skin contact whenever possible.
• Once your baby has become successful feeding on a bottle, she may be put to the breast for non-nutritive sucking. Non-nutritive sucking exercises stimulate important muscles in your baby’s mouth and tongue and can facilitate the bonding experience. It may also help stimulate milk production for those moms who continue to pump breast milk.
9. How do I feed my child in preparation for her cleft palate repair?
SLPs, nurses, or lactation consultants instruct mothers in feeding techniques and reassure them that successful feeding can be accomplished with the least amount of stress for the infant and family. Cup feeding is something that is introduced to some babies before surgical repair of their cleft palate. It will take several months for your baby to get used to cup feeding, so it's good to start early, which is around 6 months of age.
Begin by using the cup to replace one feeding a day, and gradually increase the number of cup feedings.
Over several weeks, you should be able to completely transition to a cup.
Begin spoon feedings, using a soft-tipped spoon, when your baby is 6 months old. As directed by your paediatrician, you may give her cereal, fruits, vegetables and other foods with the spoon. You may also use the spoon to feed her liquids.
10. How do I feed my child after her cleft palate repair surgery?
The timing and the method of feeding after surgery depend on a no. of factors like the type of cleft(lip or palate/or both ), unilateral or bilateral, size of the cleft, the surgery performed (primary lip repair or palate repair) and the preference of the surgeon and cleft team. Your feeding team consisting of Speech-language pathologist, lactation consultant and cleft team nurse will review feeding instructions at the time of your baby's cleft palate repair.
The child might be put on a spoon, cup or syringe feeding for the first 10 to 14 days after surgery. Then based on the preference of the surgeon child might be allowed to breastfeed post that.
In some instances, your child may return to using a cleft feeder. If the cleft feeder is not appropriate for your child, a “sippy cup” will be introduced prior to the surgery.
Your child should use a cup that either has a very short spout or doesn't have a spout at all. Your nurse will show you the type of cup that's best for your child.
If your child is having difficulty getting enough fluid with the cup, it is permissible to use a specialized feeding device like a silicone nipple with a large crosscut like the Haberman® bottle or a standard soft silicone nipple, Ross® nipple or Dr Brown’s Feeding System.
Your paediatrician will advise for purees ( baby food) around 6 months of age which you can feed with a spoon. Be sure to keep the nose and mouth clean after meals as you begin feeding these thicker textures.
Keep in mind, finding what works for you will take some trial and error because every child is unique. You can find help from experts who deal with these very same feeding issues on a daily basis, we at Sounderic can help you with that. You don’t need to reinvent the wheel or feel like you are all alone.
Check out blog on Speech and .language difficulties in children with Cleft Lip and Palate.
Or our Guide for parents on Cleft Lip and Palate https://www.sounderic.com/post/cleft-lip-and-palate-guide-for-parents