If Cleft Diagnosed Before Birth

You should receive counseling before the birth and have been introduced to the cleft team. You may meet a surgeon, pediatrician, counselor or other member of the cleft team. Once a second scan has confirmed that your baby has a cleft, your ante-natal team will arrange for specialists to see you. You will find It useful to contact to contact the Pakistan Cleft and Palate Association (PCLAPA) for information and support. Ask the member of your ante-natal team for further information and directions.

If Cleft Diagnosed After Birth

Your child’s general health will be assessed and the treatment needed will be explained to you. Within the first two days after the birth. If you have a 24 hour confirmation, ask about the arrangements to meet the cleft team and get a contact and telephone number.

Counseling

During the first months after the birth, you and your family should be offered counseling, reassurance and help to cope with your feelings and concerns, particularly after leaving hospital. Parents may need help immediately after the birth, while others have problems months later. Counseling should be available at any time. You may wish to ask about:

• Your feelings about you baby.
• How to handle the feelings of your partner / relatives / friends / other children.
• Getting help to cope with the stresses of your baby being in hospital for an operation.

Bonding With Your Baby

You may be entitled to extra help for hospital problems; for example, with fares to hospital or child care for other children. You may not want to talk to anyone outside the family, and should never feel that you have to do so. If you feel the counseling is not going well, ask to see someone else. You should be given information about everything in the hospital. If you have other children, explain the situation to them in terms they can understand, letting older brothers and sisters know what the baby’s face does not hurt and that it will be made better.

Support in feeding the new baby

In order to feed, your baby must be able to form a vacuum inside his / her mouth, and position the tongue properly. This is usually done by sealing the lips around the nipple or treat and closing off the back of the mouth with the soft palate. Babies with clefts may not be able to create this vacuum or position the tongue properly. Some have smaller lower jaw (mandible), making swallowing difficult.

A feeding specialist will decide an appropriate feeding plan with you. A thin feeding tube may be used to help those babies who also have a small jaw. Maternity staff and someone from your team. A specialist nurse (health visitor) should be available to you during the first months back at home. Within the first 24 hours following the birth and through the early years. Breast feeding is possible for babies with a cleft lip only, but is rarely possible for those with a cleft palate or cleft lip and palate. So a mother should not feel guilty if their baby cannot suck. Supplementary bottles of expressed or formula milk may be necessary if breast feeding is the mother’s choice. Many babies will need extra help with feeding using different types of bottles and teats. The specialist nurse will supply you with these initially. Some babies may not have the energy to suck from a teat, and can benefit from a Rosti Scoop, which requires less effort from the baby. You are able to on-going feeding equipment.

In order t assist with feeding, your orthodontist may be asked to provide a small dental feeding plate. For the majority of babies these are not necessary but there may be other reasons why their use is advised. In some cases, the plate may be used to keep the tongue out of the cleft palate.

A special orthopedic plate may also be used to begin to apply pressure to close and align the cleft prior to surgery. The baby will need several of these plates before surgery. Be aware that surgeons do not agree on the benefits of using feeding and orthopedic plates from birth. So ask members of your team if any why a plate is being used and do not be afraid to give out your opinion. Make sure your baby is given enough time to get used to feeding before trying alternatives. Unless your baby has other problems, you should not need to be separated from your baby. Note the name and telephone numbers of your consultant.