In keeping with the causes of cleft lip and palate the steps a pregnant women should take are:
- Eat foods rich in folic acid/ take folic acid supplements
- Avoid smoking
- Avoid alcohol consumption
- Consider Genetic Counselling
- Only take those medicines prescribed by your doctor.
After a child has had surgery to treat a cleft lip or palate the specialists which need to be consulted include:
- Speech and language pathologists.
- A dentist
- Hearing therapists (audiologists).
- Occupational therapists.
- Social workers.
- Lactation consultant.
The treatment of cleft requires a team of specialists. These include Plastic / maxillofacial surgeon Dentists/ orthodontist and ENT specialists and speech pathologist. It is well advised that if a cleft problem is seen in a child, or if any of the aforementioned complications are seen then one needs to take the child to the nearest hospital where one of the specialists must be consulted.
Children often face psychological problems due to the condition. As a cleft deformity is easily distinguishable the children often face self-image problems. Experts advise explaining the condition to the child as soon as they are old enough to understand. Treat it as a normal topic of conversation.
One can also help strengthen the child's independence by involving them in the decision-making process about their treatment and their life in general.
- Can our baby be fed properly - Babies with cleft can experience problems while feeding specially those who have cleft palate and can’t suckle properly
- will our baby’s teeth grow properly - Cleft lip and palate cause changes to the structure of the mouth and hinder the development of teeth, this makes them more vulnerable to tooth decay
- Will our baby have trouble talking – The roof of the mouth plays an important role in helping a child form sounds for speech.
If a cleft palate is not repaired it will lead to speech problems when the child is older. That is why cleft palate is repaired before speech development starts in most cases the child goes on to develop normal speech but will require speech therapy
- can our child have hearing problems- Children with cleft palate often develop a condition called glue ear, where sticky fluid collects in the middle ear behind the eardrum. This may reduce their level of hearing and can sometimes cause ear infections.
The above complications may need individual attention and treatment aside from surgery.
Cleft is usually treated with surgery.
Lip Repair Surgery- This surgery is usually performed when the child is 3-6 months old. In this surgery the cleft lip is usually repaired including the underlying muscles and the nose is usually repaired at the same time.
Palate repair Surgery- Palate repair surgery is usually performed when the child is 10 to 12 months old. The muscles and lining of the palate are rearranged. In most cases no extra tissue is needed to complete the operation. Speech therapy is recommended for all children, following closure of cleft palate.
The timing of the suregry also depends upon the general nutritional status and health of the child, an average weight of 10 pounds and a hemoglobin of 10 g/dl is required for a safe surgery.
In most cases the exact cause is unknown but it is thought to be a combination of genetic and environmental factors.
Inherited genes- Genes a child inherits from his parents occasionally makes him more vulnerable to developing cleft lip and palate.
- Lack of folic acid during pregnancy- Folic acid helps reduce the chances of birth defects. It is found in food like lentils, dark green vegetables and citrus fruits to name a few
- Smoking- A mother pregnant woman who smokes increases the chances of her baby being born with a cleft. She should also avoid second hand smoking
- Alcohol consumption- Alcohol consumption during pregnancy can lead to development of cleft lip and palate problems
- Obesity- Mothers who are obese have a higher chance of having children with cleft lip and palate
No. Some children with clefts have clefts that involve the lip and palate. Some have clefts that involve only the lip and some have clefts that only affect the palate.
1 in every 800 live births
35,000 children are born with cleft lip and palate every year
approximately 25- 30% children receive any kind of surgery creating a huge back log of clefts in our country
The figures are affected by the issue of abortion once a cleft lip or palate is detected in the ultrasound.
Cleft problems are usually found during ultrasound scans between the 5th & 9th week of pregnancy and if not, then they are detected at the time of birth Some cleft problems are hidden by the lining of the mouth and are detected when speech problems begin which could take months and even years.
The common signs one should look out for are:
- Milk frequently coming out of the baby’s nose while feeding
- The inability to suckle, drink from a straw, blow out candles etc.
- Nasal sounding speech
How should I feed my child?
Feeding the infant takes patience and practice. We recommend soft squeezable plastic bottle with long nipples. You can increase the flow by gently squeezing or putting pressure on the bottle. It is important to feed the infant before he/she becomes too hungry. Position the infant in an upright position with the head tilted back slightly. This position allows the milk to flow down into the throat and less into the nose. Infants with clefts do swallow more air and need to be burped more frequently. Generally the infant cannot produce enough negative pressure to obtain ample breast milk to provide adequate nourishment. Using a breast pump to extract the milk and feeding the infant breast milk from a squeezable bottle is recommended.
A cleft is a gap/split in the upper lip or the roof of the mouth-palate (and sometimes both). It may be one-sided or affect both sides. It occurs when separate areas of the face do not join together properly while a baby develops during pregnancy.
Below are some pre and post-op pictures of cleft lip and palate repair
The presence of a serious Congenital Heart Defect often results in enormous emotional and financial strain on young families at a very vulnerable stage. Family education is an important part of successful coping.
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Children with Congenital Heart Defects may have developmental challenges like impaired memory, low attention span and difficulty in concentrating. All of these require special community and school based resources to help such children achieve their potential. This means additional provisioning and specially skilled resource persons.
Successful treatment requires highly specialised care which in turn requires extensive financial resources.
Anyone can have a child with a congenital heart defect. However, if one or more family member have already had a baby with a heart defect, the risk increases.
Not all, but most are. These defects are mostly diagnosed early in life. Sometimes, heart disease might not be congenital but may occur as heart damage due to infections, e.g. Rheumatic fever.
As so little is known about causes of Congenital Heart Defects there is no guaranteed way to avoid it however if you are pregnant you can take the following steps to reduce the risk.
- Ensure vaccination against Rubella and Flu
- avoid consumption of alcohol and drugs
- before taking any medication check with your GP
- Avoid contact with people known to have infections
- If you have diabetes make sure it is controlled
- Avoid exposure to organic solvents such as those used in dry cleaning, paint thinners and nail polish remover.
- Periodic Preventive health check ups in children can help in early detection before the symptoms are manifested and can lead to better management/ outcome.
No obvious cause is identified in most cases but the following conditions are known to increase the risks of CHD.
- Down’s Syndrome- 50% of the children suffering from down’s syndrome suffer from congenital heart disease. 90% of the time it’s a septal defect.
- Turner syndrome- A genetic disorder that only affects females. 25% of children suffer from congenital heart disease.
- Noonan syndrome- 80% of the children with Noonan syndrome will be born with congenital heart disease. 50% of the time it is likely to be pulmonary stenosis
- women with diabetes are 5 times more likely to give birth to a baby with congenital heart disease
- 3-6% of women with diabetes who become pregnant may give birth to a baby with a heart defect.
- If a pregnant woman drinks too much alcohol during pregnancy, it can cause foetal alcohol syndrome.
- 50% of the children with foetal alcohol syndrome might have congenital heart disease.
A viral infection for which a vaccine is given as a part of routine childhood vaccination schedule. All women should check whether or not they have been vaccinated for rubella
During the first trimester if the mother contracts the flu her child is twice as likely to get a congenital heart disease for reasons unknown
Medications - some medicines increase the risk factor of congenital heart defects
- Certain anti-seizure medicines like benzodiapines and lithium
- Certain acne medications such as isotretinoin and topical retinoids
- Rare genetic condition that can cause learning and behavioural difficulties
- Pregnant Mothers with PKU who are not treated for it are 6 times more likely to give birth to children with congenital heart disease
There are a host of diagnostic options available which can be used by doctors to identify the extent of the disease
- Echocardiography - It is a painless test that uses sound waves to create a moving picture of the heart. The sound waves (ultrasound) bounce of the structures of the heart. A computer. Echo allows the doctor to clearly see any problem with the way the heart is formed or the way it is working.
- ECG (electrocardiogram) - It is a simple, painless test that records how fast the heart is beating and its rhythm (steady or irregular). It also records the strength and timing of electrical signals as they pass through the heart. It can detect whether one of the heart’s chambers is enlarged.
- Chest X Ray - It is a painless test that creates pictures of the structures in the chest, such as the heart, lungs and blood vessels. This test can show whether the heart is enlarged. A chest x ray also can show whether the lungs have extra blood or fluid, a sign of heart failure.
- Pulse Oximetry - (specific for holes in the heart) Pulse oximetry shows the level of oxygen in the blood. A small sensor is attached to a finger or ear. The sensor uses light to estimate how much oxygen is in the blood.
- Cardiac Catheterization - During cardiac catheterization a thin, flexible tube called a catheter is put into a vein in the arm, groin, or neck. This tube is threaded to the heart. Special dye is injected through the catheter into a blood vessel or one of the heart’s chambers. The dye allows the doctor to see the flow of blood through the heart and blood vessels on an x ray image. The doctor can also use a catheter to measure the pressure inside the chambers of heart
If you observe any of the above mentioned symptoms in your child, you need to visit the nearest hospital and ask for an appointment with a paediatric cardiologist (Heart Specialist).
If a paediatric cardiologist in not available, a general physician should be consulted. The GP can refer you to a paediatric cardiologist in the nearest hospital in case the requirement arises for further treatment.
If signs and symptoms are ignored, the following complications arise:
- Impaired memory
- Comprehension and expression
- Low attention span and difficulty concentrating
- Poor planning abilities
RTI- Respiratory Tract Infection. These are infections of the lungs and airways such as pneumonia
Pulmonary Hypertension- High Blood Pressure at an early age
Endocarditis- This is an infection of the lining of the heart and valves, or both. If it is not treated, it can cause life-threatening heart damage.
- A high temperature above 100.4F
- Loss of appetite
- Muscle and Joint Pain
- Night Sweats
- Shortness of Breath
- Persistent Cough
Heart Failure - Heart failure is where the heart can’t pump enough blood around the body to meet the body’s needs. It can occur shortly after a baby with a severe congenital heart defect is born
Heart Rhythm problems (Arrythmia)
Patients with Congenital Heart Defects can develop heart rhythm problems. Normal heart rate is 60-100 beats per minute. A heart may beat too slowly or too fast. In case the arrythmia originates from the upper part of the heart, it is called atrial arrhythmia and when it is from the lower part it is called ventricular arrhythmia.
A history of congenital heart disease increases the risk of a blood clot in the heart which can, travel up to the lungs or brain. This can lead to a pulmonary embolism or stroke.
As a parent you need to watch for the following signs in your child. The presence of these could indicate a congenital heart defect.
- Excessive sweating
- Extreme tiredness and fatigue
- Poor feeding
- Rapid heartbeat
- Rapid breathing
- Shortness of breath
- Chest pain
- A blue tinge to the skin (cyanosis)
- Inadequate weight gain
ASD - Atrial Septal Defect (19%)
A rare disorder which involves a hole in the wall that separates the 2 upper chambers of the heart. Initially, the symptoms may be so mild that they may go unnoticed. This disorder is often not recognised until school age or even adulthood. ASDs are classified according to their location.
VSD - Ventricular Septal Defect (33%)
A disorder which involves a hole in the wall that separates the 2 lower chambers of the heart. If the VSD is large and surgically uncorrected, pressure builds in the lungs and this is called pulmonary hypertension. The greater the pressure, the greater are the chances of the blood flowing from the right ventricle to the left ventricle. This causes unoxygenated blood to be pumped to the body causing cyanosis.
Tetralogy of Fallot (16%)
This is a combination of 4 abnormalities.
- Right ventricular hypertrophy – thickening of the right ventricle
- VSD – ventricular septal defect
- Abnormal position of the aorta – the aorta is the main artery carrying blood from the heart to the whole body
- Pulmonary valve stenosis – the narrowing of the pulmonary valve. This is the major issue of tetralogy of fallot
Septal Defects are called Holes in the heart. They are holes between the right and left side of the heart in the Septum. This hole leads to mixing of Oxygen rich and Oxygen deficient blood. (NHLBI- National Heart Lung and Blood Institute)
The heart has 4 chambers. The two upper chambers are called atria and the 2 lower ones are called ventricles. The right and the left halves of the atria and the ventricles are divided by a muscular wall called the septum. Congenital heart disease (CHD) is a general term for a range of birth defects that affect the normal working of the heart. Most congenital heart defects affect how blood flows through the heart or through the blood vessels near the heart. CHDs can vary from mild (such as a small hole in the heart) to severe (such as missing or poorly formed parts of the heart).
The term congenital means that the heart problem develops before the birth of the baby.
Some CHDs may be diagnosed during pregnancy using a special type of ultrasound called a fetal echocardiogram, which creates ultrasound pictures of the heart of the developing baby. However, some CHDs are not detected until after birth or later in life, during childhood or adulthood.
- Reported incidence of CHD range between 4.05-10.2/1000 live births. (indianpediatrics.net)