Isolated congenital aglossia is a very rare condition present at birth in which a baby is born without a tongue. The early signs of isolated congenital aglossia often include trouble with feeding, swallowing, and later speech, although some children adapt better than expected. It is usually recognized at birth or in infancy, and it is a lifelong condition. Not everyone will have the same experience. Treatment for isolated congenital aglossia usually focuses on feeding support, speech therapy, and dental or jaw care, and people with isolated congenital aglossia often have a normal life span when no major related problems are present.
How many people live with Isolated congenital aglossia?
No reliable worldwide or U.S. count is available for isolated congenital aglossia. It is considered extremely rare and is known mostly from scattered case reports, not from large tracking databases (NIH Genetic and Rare Diseases Information Center, 2024; Orphanet, 2024).
Overview
Isolated congenital aglossiaSymptoms
Isolated congenital aglossia is present at birth and means the tongue is partly or completely missing. Common signs include feeding and swallowing problems, unclear speech, and sometimes differences in jaw, tooth, or mouth development.
Outlook and prognosis
With isolated congenital aglossia, many people can do well long term, especially with early feeding, speech, and dental support. Prognosis depends on how much eating, speech, and jaw growth are affected, but overall health is often otherwise normal.
Causes and risk factors
Isolated congenital aglossia usually develops before birth for reasons that are often unclear. It may result from a sporadic developmental change, and rarely may run in families. No lifestyle or environmental risk factor has been clearly proven.
Genetic influences
Genetics do not seem to play a major role in most cases of isolated congenital aglossia. Many are sporadic, with no clear inherited cause, though rare cases may occur alongside broader genetic syndromes rather than true isolated congenital aglossia.
Diagnosis
Diagnosis of isolated congenital aglossia usually starts with clinical features seen at birth and an exam of the mouth. Imaging may help define nearby structures, and genetic tests can be considered if other birth differences suggest an underlying syndrome.
Treatment and drugs
Treatment for isolated congenital aglossia centers on feeding, speech, and dental support as a child grows. Many living with isolated congenital aglossia benefit from speech therapy, orthodontic care, and sometimes reconstructive surgery to improve eating, swallowing, and clear speech.
Symptoms
The main signs of isolated congenital aglossia affect feeding, swallowing, and speech from very early life. For many people with isolated congenital aglossia, the tongue is absent at birth, but the impact on eating and communication can vary quite a bit. Early features of isolated congenital aglossia are often clear soon after birth, while challenges with chewing, speech, and dental development may become more noticeable over time.
The tongue is absent at birth, and sometimes only a very small tissue remnant is present. This is usually obvious early and helps explain later feeding and speech differences.
Babies may have trouble latching, creating suction, or moving milk around the mouth. Longer feeds, coughing during feeds, or slow weight gain can happen, especially in infancy.
As solids are introduced, moving food to the back of the mouth and clearing it after a bite can be hard. Some children do better with softer foods, small bites, and extra time at meals.
Sounds that normally rely on tongue movement can be difficult to make clearly. Speech may be less distinct, although many children develop understandable speech with support and practice.
How people usually first notice Isolated congenital aglossia?
How isolated congenital aglossia is first noticed is usually very early, often right at birth, when parents and doctors see that a baby is born without a tongue or with only a very small remnant of tongue tissue. The first signs of isolated congenital aglossia are usually feeding trouble, difficulty latching or moving milk in the mouth, and later concerns about swallowing and early speech development. In many living with isolated congenital aglossia, the finding is obvious on the first newborn exam, although doctors will also look closely for other mouth, jaw, or limb differences to confirm that it is truly isolated.
Types of Isolated congenital aglossia
No distinct types of Isolated congenital aglossia are widely recognized.
Can I slow down the onset of symptoms?
No. For isolated congenital aglossia, which means being born without a tongue, there is no evidence that lifestyle changes or medical treatment can delay the start of symptoms because the condition is already present at birth, not something that begins later. Care focuses on early help with feeding, speech, and mouth or dental growth, often with speech and feeding specialists, dentists, and sometimes surgery when needed; this may improve daily function, but it does not prevent the condition. Even though the onset cannot be slowed, early support can still help many living with isolated congenital aglossia do as well as possible.
What genetics can tell you about symptoms
For isolated congenital aglossia, genetics usually cannot tell doctors much about exactly which symptoms someone will have, how severe feeding or speech challenges may be, or how daily function will develop over time, because no single well-established gene has been shown to predict the isolated form. In most people living with this condition, symptoms are present from birth, and day-to-day differences tend to depend more on how the mouth and jaw formed and on early support such as feeding and speech therapy than on a known genetic pattern. When aglossia happens as part of a broader genetic syndrome, genes may help explain associated features, but for the isolated form, genetic testing often does not provide clear answers about symptoms.
Causes and risk factors
For families, one of the hardest parts is that the exact cause of isolated congenital aglossia is often not known. It develops very early in pregnancy when the tissues that form the tongue do not grow in the usual way. In most isolated cases, doctors have not found one proven inherited gene change, but a new genetic change or an early developmental disruption may play a role. Researchers are still learning how these pieces fit together. Family history is uncommon, and there are no clear lifestyle risk factors for isolated congenital aglossia, although general prenatal health still matters for overall fetal development.
What are the most common causes or risk factors?
In isolated congenital aglossia, which means being born without a tongue and without other major birth differences, the tongue does not form normally very early in pregnancy, but in most cases doctors cannot find a clear cause. It is usually not passed down in families, and most people living with it have no family history, although rare cases may be linked to changes in genes or other early growth problems in the developing baby. There are no well-proven common lifestyle, diet, or environmental risk factors for the isolated form.
Environmental and biological risk factors
Because isolated congenital aglossia is extremely rare, doctors are still learning about the main risk factors for isolated congenital aglossia. Doctors often group risks into internal (biological) and external (environmental). Most suspected influences act very early in pregnancy, and in many families no single cause is found.
Most suspected risks act in the first 4 to 8 weeks of pregnancy, when the tongue and nearby mouth tissues are taking shape. A small disruption in this short window can affect development very early.
Reduced blood supply to the developing mouth is one of the main biological explanations proposed for isolated congenital aglossia. These vascular events are thought to be sporadic in many cases.
Amniotic bands or other early physical disruption in the womb have been linked to some rare mouth and jaw reduction defects. In a small number of cases, this kind of interference may play a role in isolated congenital aglossia.
Exposure in early pregnancy to agents that can interfere with fetal development, such as ionizing radiation or certain toxic chemicals and medicines, may raise the risk of severe craniofacial differences. For isolated congenital aglossia, no single exposure has been confirmed as a common cause.
Genetic risk factors
When a baby is born with isolated congenital aglossia, families usually want to know why it happened and whether it could happen again. The genetic causes of isolated congenital aglossia are still not well defined, and many cases seem to happen sporadically. Some risk factors are inherited through our genes. A genetics evaluation can still be useful, especially if there are other birth differences or a family history of similar conditions.
No single gene: Researchers have not found one confirmed gene that explains most cases of isolated congenital aglossia. This means genetic testing may be normal even when the condition is present.
Sporadic pattern: Many reported cases happen in a child with no known family history. In these situations, isolated congenital aglossia often seems to be a one-time event, though recurrence cannot be ruled out completely.
Family history: If close relatives have aglossia or related differences of the mouth, jaw, or limbs, an inherited tendency becomes more likely. Genetic counseling can help families understand whether this pattern suggests a higher chance in future pregnancies.
New gene change: Sometimes a genetic change may arise for the first time in the child instead of being passed down from a parent. This can explain why a family with no previous history may still have one affected child.
Other birth differences: When aglossia appears along with other structural differences, doctors may suspect a broader genetic condition rather than truly isolated congenital aglossia. This often changes which genetic tests are most useful and how recurrence risk is estimated.
Lifestyle risk factors
With isolated congenital aglossia, daily habits do not cause the condition, but they can strongly affect eating, speech, oral comfort, and the risk of complications. When people ask about lifestyle risk factors for isolated congenital aglossia, the key issue is usually how lifestyle affects isolated congenital aglossia in day-to-day function rather than what caused it. Choices around food texture, oral care, communication practice, and irritant exposure can make symptoms easier or harder to manage.
Hard, dry, sticky, or poorly chewed foods can make swallowing more difficult and raise the risk of choking or aspiration. Softer, moister, and easier-to-manage foods may improve safety and comfort during meals.
Large bites, fast eating, and talking while eating can increase swallowing difficulty in people with isolated congenital aglossia. Smaller bites, slower pacing, and focused eating may help reduce fatigue and improve control.
Limited food choices caused by chewing or swallowing difficulty can lead to poor calorie, protein, vitamin, or mineral intake. A well-planned diet, sometimes with dietitian support, can help maintain growth, strength, and healing.
Low fluid intake can worsen dry mouth and make food handling and swallowing less comfortable. Good hydration may help with oral comfort and smoother swallowing.
Risk prevention
Isolated congenital aglossia is a rare condition present from birth in which the tongue is partly or completely absent without a broader syndrome causing it. Because it develops before birth, there is usually no proven way to prevent isolated congenital aglossia itself. For most families, prevention means lowering the risk of complications, supporting feeding and speech, and watching growth and dental development over time. Different people need different prevention strategies—there’s no single formula.
Good prenatal care can support overall fetal health, even though it usually cannot prevent isolated congenital aglossia. Avoiding alcohol, smoking, and nonessential drugs in pregnancy may help reduce general birth-defect risks.
If you are pregnant or planning pregnancy, review all medicines and supplements with your clinician before making changes. This helps avoid exposures that are known to raise the risk of some congenital problems, although most cases of isolated congenital aglossia have no clear preventable cause.
If there is a family history of birth differences or a previous pregnancy affected by a craniofacial condition, genetic counseling may help clarify recurrence risk. Knowing your risks can guide which preventive steps matter most.
After birth, early assessment of latch, swallowing, and weight gain can help prevent poor nutrition and dehydration. Many living with isolated congenital aglossia do best when feeding plans are tailored early, sometimes with help from a feeding specialist.
Can you prevent Isolated congenital aglossia?
No, isolated congenital aglossia, meaning being born without a tongue, usually cannot be prevented. It is a very rare condition that starts very early in pregnancy, and in most cases there is no clear, proven cause, so there is no known way to stop it from happening. General prenatal care and avoiding harmful exposures in pregnancy are important for overall fetal health, but they have not been proven to prevent this specific condition.
Transmission
Isolated congenital aglossia is not contagious, so it cannot be passed from one person to another through touch, saliva, sex, or everyday contact. When people ask about genetic transmission of isolated congenital aglossia, the main point is that most reported cases seem to happen sporadically during very early development before birth, rather than being clearly inherited from a parent.
Because isolated congenital aglossia is extremely rare, how isolated congenital aglossia is inherited is not fully defined, and many living with it have no known family history. If there are other birth differences in the family or more than one affected relative, a genetics specialist can help estimate the chance of it happening again in a future pregnancy.
When to test your genes
Genetic testing is usually most helpful if congenital aglossia occurs with other birth differences, developmental concerns, or a family history suggesting a broader syndrome. For truly isolated congenital aglossia, routine gene testing is often not informative, but genetics consultation can help decide whether testing could refine care or recurrence risk.
Diagnosis
Many living with isolated congenital aglossia are identified early because a baby is born without all or part of the tongue, and feeding, swallowing, or later speech may need closer attention. The diagnosis of isolated congenital aglossia is usually based on the baby’s visible features and a careful exam, then confirmed by checking whether any other body systems are involved. Getting a diagnosis is often a turning point toward answers and support.
Doctors usually diagnose isolated congenital aglossia by examining the mouth and confirming that the tongue is completely or partly absent. They also look at the jaw, palate, lips, and airway to understand how the difference may affect feeding, swallowing, and speech.
A detailed pregnancy, birth, and health history can help rule out injuries or other rare causes of tongue loss after birth. Family history is often a key part of the diagnostic conversation, even though many cases happen without a known family pattern.
Because isolated congenital aglossia can sometimes occur with other birth differences, doctors examine the hands, feet, face, and growth pattern. This helps determine whether it is truly isolated or part of a broader syndrome.
In newborns and infants, specialists may watch how the baby latches, swallows, and breathes during feeding. If needed, a swallowing study can show whether milk or food is moving safely into the esophagus rather than toward the airway.
How is Isolated congenital aglossia diagnosed?
Isolated congenital aglossia is usually diagnosed at birth or soon after by a careful physical exam, because the tongue is partly or completely absent from birth. Doctors also check how the mouth and jaw are formed and may look for any other birth differences, feeding problems, or speech-related issues to make sure it is truly isolated and not part of a broader condition. Genetic testing is not the main way this is diagnosed, but it may sometimes be offered if there are other unusual findings or a family history that suggests a genetic cause.
Stages of Isolated congenital aglossia
Isolated congenital aglossia does not have defined progression stages. This is because it is a condition present from birth, and it does not usually follow a step-by-step pattern of worsening over time. Instead, the main issues are often how feeding, swallowing, speech, and mouth development are affected as a child grows. Doctors usually diagnose isolated congenital aglossia through a physical exam and by checking for related differences in the mouth, jaw, and face, while follow-up visits help track function, growth, and the early symptoms of isolated congenital aglossia over time.
Outlook and prognosis
Outlook for isolated congenital aglossia is often better than the rarity of the condition might suggest, especially when there are no major associated birth defects and care is coordinated early. Many affected children can achieve good overall health and normal life expectancy, but they may continue to need speech therapy, feeding support, dental and orthodontic care, and monitoring of jaw and airway development. Functional outcomes vary with the degree of oral and mandibular involvement: some people adapt remarkably well to swallowing and speech, while others have persistent articulation difficulties, chewing problems, drooling, or obstructive sleep symptoms. Growth and nutrition can be challenging in infancy, but these issues often improve with multidisciplinary management. Mortality data are very limited because isolated congenital aglossia is exceptionally rare, and deaths are not typically reported from the isolated absence of the tongue itself. Prognosis is therefore driven mainly by the severity of related craniofacial problems and access to specialized long-term support.
Long-term effects
For many living with isolated congenital aglossia, the long-term picture centers on how eating, speaking, mouth growth, and daily oral function develop over time. Effects can range from mild to more noticeable, depending on jaw shape, the floor of the mouth, and whether other mouth or facial differences are present. Long-term effects vary widely, and some people with isolated congenital aglossia adapt well while others continue to have lasting functional challenges. Early symptoms of isolated congenital aglossia are often most obvious in infancy and childhood, but some effects become clearer later as speech, teeth, and facial growth mature.
Eating can remain slower or more effortful, especially for foods that need strong tongue movement to form and move a bite. Some may continue to prefer softer textures or need extra time at meals into later childhood or adulthood.
Many people have long-term differences in how clearly they pronounce certain sounds that usually depend on tongue contact inside the mouth. Speech may still be understandable overall, but some words can take more effort and may sound different from person to person.
Over time, growth of the lower jaw and the shape of the mouth can develop differently, which may affect how the upper and lower teeth meet. These changes can influence chewing, facial profile, and space inside the mouth as a child grows into adolescence and adulthood.
Crowding, bite differences, or unusual tooth position can become more noticeable with age as the jaws and teeth develop together. For many, this can mean long-term changes in dental alignment rather than a problem that stays exactly the same from birth.
How is it to live with Isolated congenital aglossia?
Living with isolated congenital aglossia, a condition present from birth in which the tongue is absent, can affect everyday basics like speech, chewing, swallowing, and keeping the mouth moist, although the impact varies from one person to another. Many people with this condition learn practical ways to adapt over time, often with help from speech therapy, feeding support, dental care, and sometimes surgery or other treatments tailored to the shape and function of the mouth and jaw. Daily life may involve extra time for eating, clearer communication strategies, and regular medical follow-up, while family members and other close supporters often take on roles as advocates, helpers, and interpreters early on. Even so, with the right support, many living with isolated congenital aglossia build effective routines and take part fully in school, work, and relationships.
Treatment and drugs
Treatment for isolated congenital aglossia focuses on helping with feeding, speech, chewing, and dental development rather than replacing the missing tongue itself. In infancy, this may mean working with feeding specialists so a baby can take in enough milk safely, and later many living with isolated congenital aglossia benefit from speech therapy and regular dental or orthodontic care to support eating and clear communication. Some may also need surgery to improve the shape or movement of the floor of the mouth, jaw, or nearby tissues if these are affecting function, but this depends on each child’s anatomy and growth. Treatment plans often combine several approaches. There is no specific drug that treats isolated congenital aglossia itself, although medicines may sometimes be used for related issues such as pain after procedures or treatment of reflux or feeding problems if they occur.
Can you cure Isolated congenital aglossia?
No. Isolated congenital aglossia, which means being born without a tongue, does not currently have a cure. Treatment focuses on helping with daily life through feeding support, speech therapy, dental care, and sometimes surgery to improve how the mouth works and develops.
Non-drug treatment
Day-to-day care for isolated congenital aglossia usually focuses on eating, speech, dental development, and comfort rather than medicine. Because this condition can affect how the mouth grows and works, treatment is often tailored to what someone is finding hardest in daily life, such as managing certain foods or being understood in conversation. Supportive therapies can make a meaningful difference, especially when started early and adjusted over time. Not every approach works the same way, so care is usually planned with a team that may include speech, feeding, dental, and surgical specialists.
Speech therapy can help people with isolated congenital aglossia learn clearer ways to form sounds and make speech easier to understand. Sessions often focus on breath control, lip and jaw movements, and practical strategies for everyday communication.
Feeding therapy helps with chewing, moving food around the mouth, and swallowing safely and comfortably. This can be especially useful when early symptoms of isolated congenital aglossia include trouble with textured foods, long mealtimes, or frequent gagging.
Food texture changes and mealtime strategies can make eating less tiring and lower the risk of choking. Some may do better with softer foods, smaller bites, extra fluids, or more time to chew.
Regular dental and orthodontic care can help track how the teeth and jaws are growing and spot bite problems early. For many, treatment begins not at the pharmacy, but with monitoring and devices that support chewing, speech, and oral development.
Your genes may have an impact on how drugs work for you
For isolated congenital aglossia, there is no well-established evidence that the genetic changes related to the condition directly change how medicines work in a predictable, condition-specific way. In day-to-day care, medicine choices are usually based more on age, body size, feeding needs, and whether someone is having surgery, dental treatment, or pain control. Some people may still inherit natural differences in how their body handles certain pain medicines or anesthesia, but that is not unique to isolated congenital aglossia and is not usually a routine part of treatment.
Pharmacological treatments
Day-to-day care for isolated congenital aglossia usually centers on feeding, swallowing, speech, dental care, and sometimes surgery rather than on long-term medication. There is no medicine that can grow a missing tongue or directly reverse isolated congenital aglossia. When drugs are used, they are usually short-term and aimed at related problems such as pain, acid reflux, infection, or procedures. In that sense, treatment for isolated congenital aglossia is mostly supportive and depends on each person’s needs.
There is no standard medicine that treats isolated congenital aglossia itself. Medicines are used only if a related issue needs treatment, such as pain, reflux, or infection.
Acetaminophen and ibuprofen may be used for discomfort after dental work, therapy-related irritation, or surgery. These drugs help with symptoms but do not change the underlying condition.
Some children or adults with feeding or swallowing difficulties may also have acid reflux, which can make meals more uncomfortable. Drugs such as omeprazole or lansoprazole may be prescribed when reflux is clearly present.
Antibiotics such as amoxicillin are only used if there is a proven bacterial infection, for example after some dental or airway problems. They are not a routine part of care for isolated congenital aglossia.
Genetic influences
For families trying to understand why a baby was born with isolated congenital aglossia, questions about heredity often come up. It’s natural to ask whether family history plays a role. Right now, isolated congenital aglossia is not tied to one known gene in the way some clearly inherited conditions are, and many reported cases seem to happen without a clear family pattern. Doctors think genes that guide very early development of the mouth and face may sometimes be involved, but in many families the exact reason remains unknown. When people ask about the genetic causes of isolated congenital aglossia, the answer is usually that genetics may contribute in some cases, while other early developmental factors may also play a part. If isolated congenital aglossia occurs along with other differences present at birth, or if similar findings appear in relatives, a genetics evaluation may help clarify whether there is an inherited cause.
Is Isolated congenital aglossia genetic?
Genetics do not seem to play a major role in most cases of isolated congenital aglossia. Many are sporadic, with no clear inherited cause, though rare cases may occur alongside broader genetic syndromes rather than true isolated congenital aglossia.
Having a genetic risk is not necessarily a diagnosis
Genetic variants are a usual part of being human and are widely found across the population. Most do not directly affect health and are simply one aspect of normal human variation. In many genes, having a variant tied to a condition points to a possible link, not a certain diagnosis, particularly when several genes and environmental influences play a role. In other cases, though, one well-understood variant in a particular gene is enough to confirm the diagnosis.
Pharmacogenetics—how genetics influence drug effects
For many living with isolated congenital aglossia, treatment is usually less about daily medicine and more about feeding support, speech therapy, dental and jaw care, and sometimes surgery or other procedures. Because this condition is very rare, there is no well-established evidence that a specific gene change directly determines which drug works best for isolated congenital aglossia itself. Genetic testing can sometimes identify whether isolated congenital aglossia is truly isolated or part of a broader genetic condition, and that can change the overall care plan. If other differences are present, such as problems with the airway, limbs, or heart, doctors may choose medicines and anesthesia more carefully around those related issues. Even then, drug choices are usually guided more by age, body size, general health, and the planned procedure than by the missing tongue alone.
Interactions with other conditions
For many living with isolated congenital aglossia, the main day-to-day challenges involve feeding, swallowing, speech, and how the teeth and jaws develop over time rather than a clear link with a specific separate disease. Because isolated congenital aglossia usually happens on its own, it is not known to have a strong, predictable association with another medical condition in the way some genetic syndromes do. Still, having more than one diagnosis can make symptoms feel harder to untangle, especially if a child also has reflux, frequent chest infections from swallowing problems, or another condition that affects the mouth, throat, or airway. In those situations, the missing tongue can make eating and clearing food less efficient, which may add to nutrition concerns or increase the risk of coughing and aspiration. Dental crowding, bite problems, and jaw growth differences may also become more noticeable if other craniofacial or developmental issues are present. If there are concerns about the early symptoms of isolated congenital aglossia alongside other health problems, coordinated care with a pediatrician, speech and feeding specialists, and dental or surgical teams can help clarify what is coming from the aglossia itself and what may be due to another condition.
How genes can cause diseases
Humans have more than 20,000 genes, each carrying out one or a few specific functions in the body. One gene instructs the body to digest lactose from milk, another tells the body how to build strong bones and another prevents the body's cells from beginning to multiply uncontrollably and developing into cancer. As all of these genes combined are the building instructions for our body, a defect in one of these genes can have severe health consequences.
Through decades of genetic research, we know the genetic code of any healthy/functional human gene. We have also identified that in certain positions on a gene, some individuals may have a different genetic letter from the one you have. We call these hotspots "Genetic Variations" or "Variants" in short. In many cases, studies have been able to show that having the genetic letter "G" in the position makes you healthy, but having the letter "A" in the same position disrupts the gene function and causes a disease. Genopedia allows you to view these variants in genes and summarizes all that we know from scientific research, which genetic letters (Genotype) have good or bad consequences on your health or on your traits.
What other conditions can cause similar symptoms to Isolated congenital aglossia?
Other conditions can cause some of the same feeding, swallowing, and speech problems seen in isolated congenital aglossia, including being born with a very small tongue, tongue-tie, a cleft palate, or a small lower jaw. Some nerve or muscle conditions that limit mouth movement can also look similar at first, especially in babies who have trouble latching, moving food in the mouth, or making clear sounds.
History
For families, the first signs have usually been practical ones: a newborn who cannot move the mouth in the usual way for feeding, or later a child whose speech sounds develop differently. Long before modern scans or genetic testing, doctors recognized these striking differences and began recording them in medical case reports. Isolated congenital aglossia, a very rare condition in which a baby is born without a tongue, entered the medical literature through these individual descriptions rather than through large studies.
Early reports mainly focused on what clinicians could see at birth and on whether a child could suck, swallow, and later form words clearly. Because isolated congenital aglossia is so uncommon, its history has been built slowly, with much of the medical understanding coming from single cases or small case series. In recent decades, awareness has grown, and doctors have become better at separating isolated congenital aglossia from cases where the missing tongue appears alongside other differences in the jaw, mouth, or limbs.
That shift mattered. Earlier descriptions sometimes grouped several conditions together, which made it harder to understand how isolated congenital aglossia could affect daily life on its own. As medical science evolved, doctors learned that many living with isolated congenital aglossia can adapt in impressive ways, especially with early feeding support, speech therapy, and careful follow-up from specialists.
The history of isolated congenital aglossia is also a reminder of how rare conditions are often understood: not all at once, but piece by piece. If you have wondered how isolated congenital aglossia was first described, the answer is that knowledge developed gradually from bedside observation, family experiences, and later imaging and surgical advances. Today, care is more individualized than it was in the past, with more attention to feeding, speech, dental development, and the support families may need as a child grows.