Frequently Asked Questions

General FAQs

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Cleft Lip / Palate FAQs

What is Cleft Lip & Cleft Palette?

A cleft in the lip or in the palate, or roof of the mouth, is caused when a tissue is left open during early development in the womb. Gaps in the upper gums or jaw can often also be found with cleft lips. Cleft palates happen when both sides of the roof of the mouth do not connect, leaving an opening in the palate. Either type of cleft might develop on both sides of the mouth or only one side. Children can have both a cleft lip and a cleft palate.

Will our baby have trouble learning to talk?

Alone, cleft lip does not usually increase the risk for speech development issues. Cleft palate, however, does. The opening in the palate gives the early talking noises of the child a nasal quality, because of the opening between the nose and mouth. Delays in the random babbling a child uses to learn to talk are common. Those born with cleft palates are often more limited in the number of different sounds they use. Palate surgery in babies sometimes leads to the babies making progress to normal speech without any additional speech therapy. Many infants and toddlers do require such therapy after surgery.

Can cleft lips and cleft palates be prevented?

Researchers are looking at different ways to avoid cleft lips and palates in future generations. Some studies, for example, have found that mothers who supplement with folic acid before conceiving and during the first trimester might have higher chances of giving birth to a child without a cleft.

Can cleft lips and cleft palates be repaired?

Surgery for cleft lips and cleft palates often yields very good results. The child's pediatrician works with a plastic surgeon to help the parents decide when to have the surgery. Most doctors agree surgery on a cleft lip should take place before three months old. Closing the cleft in the nose or mouth should also ideally take place by the age of twelve to eighteen months old. The timing of surgery depends on the patient's health and the severity of the cleft.

Can our baby be fed properly?

Newborns with a cleft lip hardly ever have issues eating. Babies with a cleft palate, however, usually need a special feeding technique. This is because a cleft in the roof of a child's mouth can hinder his or her ability to suck efficiently.

A variety of bottles and bottle nipples are specifically made to be used by babies with clefts. A lactation nurse can give information about the kinds of accessories necessary and show how to use them. Getting used to these devices can be difficult for a baby, but persistent trial and error will eventually lead to the baby's preference. Babies with cleft lips seldom struggle to breast feed, but those with cleft palates commonly have a hard time making enough suction. A mother can use a pump, though, giving her baby with a cleft palate the same nutritional benefits as breast feeding would.

Can you tell if a fetus will have a cleft palate?

While ultrasound technology has been improving, it is usually impossible to see a cleft in the early months of pregnancy. Small clefts are especially difficult to decipher on ultrasound. Even if a cleft can be spotted, there is currently no way to repair it before birth, but research with animals is looking for a way.

What can cause Cleft Palate?

Cleft is caused by defects in someone's genes. Genes that program for an infant's development enable clefts to form. Other environmental factors are also thought to contribute as well, though it is not known exactly how. Having a son or daughter with a cleft only raises the chances 2 to 5 percent that you'll have another child with the same condition. Statistically, more boys have clefts than do girls, and clefts are only a little more common in some races than others. Clefts can also happen as part of a syndrome or condition having to do with the head or face.

Some research suggests there are some outside factors which may add to the potential of having a child with a cleft lip or palate. Mothers 35 and younger have lower risk of giving birth to a child with cleft. Mothers who take folic acid supplements and avoid smoking, pesticides, lead, alcohol, and a wide range of drugs, prescription or otherwise, also decrease the odds of having a baby with a cleft.

Does a cleft lip or cleft palate cause problems for a child?

Teeth issues and ear problems happen often. Children with clefts also frequently face challenges with speech. Eating can also be more difficult for children with cleft lips or cleft palates. Working with a team of specialists, a family can address some of these issues. Plastic surgeons, speech pathologists, dentists, psychologists, and ear, nose, and throat doctors can all help to provide a better quality of life to children with clefts.

Does a cleft palate have anything to do with lisps?

Cleft palates do not have anything to do with lisps. Lisps are often caused by problems learning to speak, not defects in the actual structure of the mouth, such a cleft palate. Speech therapy is usually very good at correcting lisps.

Does everyone with a cleft palate have to have surgery? What if they don’t?

Those born into third world countries with clefts usually don't have the option of surgery. Growing up with a cleft in these places can lead to problems with speech, social isolation, and malnutrition. In the United States, there are adequate resources and those with the specialty training to give proper cleft treatments to those who need them. Fixing clefts in the palate repairs appearance and helps the patient with speech development. In addition, cleft surgery improves ear health and makes it easier to eat. Submucous cleft palates might not require fixing, but the need of the individual patient should determine the need for any surgery.

How can surgery help our baby?

Cleft lip surgery aims to give the upper lip a natural look and function. Tissue next to the opening is manipulated to bridge the cleft. Detaching and moving muscle tissue in the lip is one of the most important aspects of the surgery, allowing the muscle to surround the mouth as it's supposed to. Surgery on the palate is usually performed before most speech development, so that the child can learn to speak with a repaired mouth able to properly form words.

How many babies are born with clefts?

With or without a cleft palate, cleft lip is a top birth defect in the United States. About one in 700 children are born with the condition.

How many surgeries does it usually take to correct the lip palate?

While it depends on the patient, at least one surgery is needed to correct the lip, and a separate surgery is a requirement for the palate. To give the lip a natural appearance, however, several surgeries might be called for. Some cleft palates also need more surgeries in order to improve speech.

Is it difficult for children to eat and drink with a cleft palate?

It can be difficult, but if parents receive the proper instruction and use the right bottles and nipples, then they can help to mitigate such difficulties.

Is there a high risk of infection after surgery?

As long as the family sticks to the medical staff's instructions given for recovery at home and makes a point to have follow up visits to the surgeon, the likelihood of infection post-surgery is low.

Our son has not passed his hearing tests, and we wanted to know if the cleft palate could cause that.

A cleft in the palate can affect the hearing for the same reason it can affect speech. The gap in the roof of the mouth leads to an increased risk of middle ear infections. Children, in general, have more probability of ear infections than adults, and children with cleft palates have an even higher probability. Having an audiologist and an ear, nose, and throat specialist as parts of your child's medical team is important to detecting and treating such infections as quickly as possible.

What can be done for the child’s speech, from the beginning of infancy until school?

Treating a child with a cleft as you would any other without is one of the most crucial steps you can take. Talk to the child using normal speech, and make sure they hear well spoken language. This is how all of us learn to speak. By the age of one, the child will start to speak their earliest words. Getting evaluated by a speech pathologist at this time will help to determine where your child’s speech development is at, though consulting with such a specialist earlier is recommended. About 20 to 30 percent those born with cleft palates have speech inhibitions needing additional surgery.

What causes Cleft Lip & Cleft Palette?

Science has yet to find the exact reason. Children are born with clefts, which form during embryonic development. Researchers do know that a variety of environmental and genetic factors work together to cause the condition. Illness, drug use, or inadequate diet of the pregnant mother combined with certain genetic defects may all play a part. A family with one child with a cleft has a 2 to 4 percent increased risk that another child born into the family will also have the defect.

What is a harelip?

“Harelip” refers to lips that give the appearance of a rabbit’s mouth. Such a term is often viewed as derogatory.

What is Distraction Osteogenesis?

If a facial defect is severe enough, some patients need more oral surgery as they reach adolescence. Distraction Osteogenisis is surgery which cuts the bones in the jaw and inserts an appliance, advancing the middle of the face or top part of the jaw. For six to eight weeks, the appliance is manipulated to move, or distract, the bones. The jaw fills in the opening with new bone. Bones in the wrong orientation can then be moved into a more correct position. Though seemingly awkward, the process is mostly painless.

What is Nasoalveolar Molding (NAM)?

The need for the procedure depends on how wide the cleft is and whether or not the cleft palate is absent. The technique molds the gum ridges as well as the nose, if needed, with a product much like a retainer used to straighten teeth. An orthodontist usually makes the appliance before surgery. It is meant to make surgery less complicated. After the surgery, the infant patient wears the NAM all day and night for weeks or months, depending on the case. NAM does not cause problems with the baby’s breathing or feeding.

What is the normal recovery time after surgery?

Most often, babies need to be monitored for several days following surgery. A baby most often needs weeks of specialized attention to recuperate. During the first days after surgery, the child's hands might need to be restrained to protect them from damaging any of the surgery done.

What kind of follow-up is needed after surgery?

Following cleft surgery, a family should visit the surgeon regularly to make certain the road to recovery stays on track. The risk for infection and the failure of sutures is always there, so contact with the surgeon is important. 

Where can I get special bottles to feed my baby?

Specialty bottles like the Haberman Feeder or Pidgeon Bottle are usually provided by the hospital.

Who is responsible for “repairing” a cleft palate?

Surgeons with specific training in the area should perform the surgery. Plastic surgeons with such training or pediatric otolaryngologist surgeons, who specialize in ear, nose, and throat, are common choices, but other surgeons with expertise in cleft, craniofacial, or maxillofacial surgery could also do the job.

Why do clefts cause speech problems?

The soft palate, located in the rear of the mouth, can be deformed by a cleft. As we speak, this portion of the palate shifts, preventing breath from going through the nose. When there is a cleft in the palate, the air escapes through the nose when a child speaks, making it hard for a child to pronounce many English sounds. The sounds necessary to speak English need the soft palate closed off from the nose. There are only three sounds in the English language that do not need this: “m” sounds, “n” sounds, and “-ing” sounds. Every other sound in our language comes orally. Clefts make it difficult or impossible for children to close off the soft palate, giving leading to problems speaking normally. Surgery can make the cleft smaller, allowing the patient to better close the soft palate. Speech therapy after the surgical procedure is often necessary in teaching the child to properly use the soft palate.

Will my child need any further treatment for the teeth?

Braces are a necessity for almost every child with a cleft palate. A cleft in the palate can cause teeth to break through gums and wrong angles or prevent them from coming in at all. Some children need braces as early as age five or six.

Will our baby be developmentally disabled?

The majority of those born with cleft lip with or without cleft palate alone doesn't express adelay in motor skills or problem solving ability, but does have more risk of delays in language and speech development. Children in school that have had cleft surgery have indicated more difficulty in reading and language subjects. If a child's cleft is part of a syndrome, then there is a greater likelihood for developmental delay.


Donation FAQs

Do you accept donations via PayPal?

Absolutely. Just choose it as your method of payment on the donation page.

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If donating from inside the United States, click “Donate” to give.

How do you determine who receives money that is donated?

There is an application that must be filled out and verified. Once verified it is presented to the board for determination of financial assistance.

Where do my donations go?

After our application process is completed and approval has been granted from the board, assistance will be issued to the individual or to the medical facility as deemed by the board.

Will my donation be tax deductible?

This is a 501(c) (3) charity, which means all contributions to MiaMoo can be deducted from your taxes following IRS guidelines. You will receive an emailed receipt after your donation.