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15 Of The Rarest Conditions Kids Have To Live With

There are many issues that a child must deal with. Fitting in at school, making friends, dealing with the pressures of living in modern day society. However, some kids must face some seemingly insurmountable obstacles, especially when it comes to their health. Many of these individuals have a condition that is hard enough to deal with on its own, let alone the fact that they often look differently than others, which in today’s day and age is an added stressor.

A baby needs to develop inside of the mother's womb. It is in there for (ideally) nine months. In those nine months, there is a lot of work that happens, taking it from a small, fertilized egg and turning it into a fully functional baby. However, along that time, there is a lot that can go wrong. Oftentimes it is due to the mother doing something she shouldn't, or ingesting something she shouldn't and so on. Sometimes, however, it's pure bad luck that can alter the baby's entire life.

These diseases range from probably fatal to just somewhat awkward, but they are all things that the person born with cannot control. In addition to learning how to live with the physical characteristics of the disorder, these infants must learn how to navigate through life with their condition, one way or another. While most of the people born with the diseases mentioned below die early in life, many of them survive and often feel that their disorder makes them a stronger person for having to deal with it.

15 Rare Genetic Skin Disorder

A recessively inherited disease, Harlequin-type Ichthyosis is a rare genetic skin disorder. Infants born with this disease have extremely thick and tight skin. The tightness often causes the skin to pull apart and bleed. Babies with this disorder often have their facial features distorted, and often look as though they have no ears, but this is caused by the tight skin pulling at the face, and the ears are often fused to the side of the head. Oftentimes the eyelids and lips are pulled so tight that they flip inside out.

Most infants born with this are premature, so they also have to face the issues that come with that. Affected infants need to be transferred to neonatal intensive care right away. They often have a hard time maintaining a healthy level of sodium in the blood, and are likely to have extremely high levels. Their corneas must also be manually lubricated, as their eyelids are flipped inside out.

14 Born With No Nose

Congenital Arhinia is the name for the condition that causes babies to be born with no nose, no nasal cavities, and no olfactory system. This is an extremely rare condition, and there have been only 30 cases reported so far. Babies born with this have severely obstructed respiratory systems, and have insufficient ability to taste things. 

This condition poses an issue for surgeons, mainly because it is so rare, they don’t really know how to deal with it. These infants can still cough and sneeze. Although it is a difficult thing to deal with, surgeons are getting better, and one girl, Tessa Evans, actually successfully underwent a full nasal transplant. She was two years old at the time. She was not given a fully functioning nose, however, and was simply given custom fitted molds. As she ages, new molds will have to be put in to keep up with the growth of her face. Once she is fully grown, she will have nostrils tattooed on, so as to try and normalize it as much as possible.

13 Condition That Sheds Skin

Another disorder that affects the skin, people born withhave areas of normal looking skin, but then have areas of thick, platelike skin that sheds. It affects the entire body, but the differences between the normal and scaly skin are less severe on the face. The condition usually crops up a couple days after birth, lasts for their entire life, and can be pretty severe.

It’s caused by a number of different abnormalities in the genetics that monitor normal skin shedding. There is a gene called transglutaminase that regulates normal skin shedding, and it's believed that an abnormality in this gene is what causes the disorder. The disorder is caused by a recessive gene, meaning both parents must be carriers, but usually don’t exhibit any signs of abnormal skin shedding. It is not contagious, and there is no reason to avoid contact with somebody who has this disorder.

12 Not Only Skin Deep

17-month-old Elisa McCann is living with Epidermolysis Bullosa, a rare and debilitating skin disease. Her condition has been rapidly improving after she underwent an experimental bone marrow transplant in May of 2014.

Nicknamed "the worst disease you've ever heard of," another disorder that affects the skin is epidermolysis bullosa. However, the internal organs may also be affected, but not as often. The skin of the affected is extremely fragile and tends to blister and then fall off. It tears with any sort of mild trauma, and it's always very painful. It can be lethal before the affected even turns 30. The only treatment available is daily wound care.

Infants born with this disease are nicknamed butterfly children, as it is said that their skin is as fragile as a butterfly. It’s caused by a genetic mutation in one of 18 possible genes. It stops the body from producing the necessary protein to keep the skin healthy and strong. It has also occurred because the body produces antibodies it shouldn't to the building blocks of healthy skin. There are many different kinds of EB, so it is referred to as a group of disorders.

11 An Incomplete Brain

Anencephaly is characterized by the lack of certain parts of the brain, skull, and scalp, and it occurs within the first few weeks of embryonic development. It's generally sporadic and is not necessarily due to hereditary reasons. Babies born with this disease are missing large portions of their brain, and generally, do not live more than a few days. Most babies with this condition are miscarried, but about 1 in every 10,000 babies born are affected by this.

Anencephaly is classified as an NTD or a neural tube defect. What happens is during development, the tube does not close properly, and therefore amniotic fluid leaks into the developing brain and spinal cord. This causes degeneration of cells, mainly in the cerebrum and the cerebellum, which contain regions responsible for thinking, hearing, vision, etc. The bones of the skull itself are often malformed as well. A baby with anencephaly has an abnormally small head, and it almost looks as though it has been smushed.

10 Too Much Of A Good Thing

Polymelia is a condition in which those afflicted are born with more than the normal number of limbs. Many times a baby will have four arms, or four legs, or something along those lines. Many times the extra limb will be malformed in some way, often shrunken. It is also known as the hydra syndrome, after the mythological creature in greek folklore.

It's believed that this often occurs in what started out as conjoined twins. One of the twins doesn't develop fully or is absorbed by the other twin, all except for one or more limbs, which come out attached to the one baby. Surgeries to remove the extra limbs seem to be improving, as there are more and more documented cases of successful removals of limbs, and there are fewer and fewer instances of failed surgeries. One of the most well-known cases was a girl born in India, Lakshmi Tatma, who was born with four arms and four legs. This was the result of a conjoined twin not fully developing. This is one of the rarest documented cases of polymelia.

9 Something's Missing

Cyclopia is a condition where a baby is born with only one eye on its forehead. This is due to a developmental issue where the orbital sockets form incorrectly in the womb. Oftentimes the nose is either missing or nonfunctional and frequently the mouth isn't there either. These babies die almost immediately due to suffocation.

There are many different reasons that a baby can be born with cyclopia. Almost always it is due to a high amount of toxins in the mother’s body while the fetus is developing. A lot of times a woman who has a history of alcoholism, and who drinks during pregnancy, can give birth to a baby with cyclopia, as the toxins will build up quickly in her body. It’s also possible that the mother ingested a toxic weed called Corn Lily. Corn Lily is often confused with Hellebore, a weed that, if ingested, can help relieve nausea and vomiting, which is why many pregnant women seek it out.

8 Out Of Control

ROHHAD is rapid-onset obesity with hypothalamic dysregulation, hypoventilation, and autonomic dysregulation. It is characterized by uncontrollable, rapid weight gain. It affects the nervous system, particularly the part that causes involuntary actions. Other symptoms include low heart rate, excessive sweating, the inability to maintain water balance, and altered pupil response.

Although unclear on exactly what causes it, scientists believe that it is probably a genetic mutation. It's hard to control any aspect of it; even though proper diet and exercise can help gaining additional weight, it still doesn't stop the person from gaining weight. There is currently no cure for ROHHAD, and the average life expectancy is between five and nine, although some people who have it survive into their 20's. To help control symptoms and to help treat it a bit, and since it affects so many different parts of the body, there are often many different types of doctors helping out the afflicted.

7 Too Much Fluid

Hydrocephalus is a disorder characterized by too much cerebrospinal fluid in the brain. It was once believed that too much water was what the problem was, but it has since been discovered that it is cerebrospinal fluid. Babies with this disorder often have an enlarged head, and sometimes the skin is stretched so tight that it almost looks translucent.

In addition to the large head, symptoms include a headache, nausea, blurry vision, bladder control problems, and thinking problems. Hydrocephalus causes permanent damage to the brain, and can greatly hinder the normal developmental patterns. There are some available treatments, and when that is done, people suffering from this condition can lead a pretty normal life. A surgeon will make a small incision and insert a shunt, which is a small plastic tube. With that, they can redirect the fluid to a place where the body can absorb the fluid. After that, a number of medications can help with the regulation of fluid.

6 Parasitic Twin Takeover

Craniopagus Parasiticus is when a parasitic twin is attached to its sibling at the head. The parasitic twin also has a very underdeveloped, or fully undeveloped body. The twin with the full body also generally has some deformities, however. The difference between a parasitic twin pair and conjoined twins is that in a conjoined twin pairing, both bodies are fully developed. In a parasitic twin pairing, however, one body stops developing during gestation.

Craniopagus Parasiticus is incredibly rare, occurring in only about 4 out of every 10,000,000 births. Most of these babies are delivered stillborn, but some survive into their childhood. That happens very rarely, however; only three cases have been documented by modern medicine to have survived birth. One girl in Egypt, Manar Maged survived the removal of her twin Islaam, but she ultimately died fourteen months after the surgery. The cause of death was documented as a severe infection of the brain.

5 Not Seeing Double

Diprosopus, also known as craniofacial duplication, is a congenital disorder where parts of the face are duplicated. Meaning a person could be born with two noses, or four eyes, or two mouths, something along those lines. It is caused by an abnormality in a protein called SHH, or sonic hedgehog (the name was inspired by the video game.)

Like most of these disorders, a good deal of sufferers are stillborn. However, there are a few recorded instances of babies surviving into their childhood. There is one documented case of a girl named Lali Singh, who was born with complete duplication. This means she had two pairs of eyes, two noses, and two mouths. However, the full extent of her disorder cannot be known due to the fact that her parents declined any examination via MRI or CT scans. She also had a cleft palette which made feeding her very difficult. As her health began to rapidly decline, her parents brought her to the hospital, where she died, most likely due to dehydration and malnutrition.

4 Two... What?

Diphallia is a condition in which a male is born with two penises. The first documented case was in 1609, occurring to a man named Johannes Jacob Wecker. There are often other congenital disorders that accompany diphallia, and there is also a higher risk of spina bifida. Infants born with this disorder have a higher chance of death due to possible infections in their complex renal systems. It is believed that this happens early on in the pregnancy, as early as between the 23rd and 25th day.

If they survive past infancy, however, people with diphallia lead pretty normal lives. According to a Reddit user, high school was kind of weird, but now he is comfortable with his condition, saying that if someone offered to remove one of his penises, he would decline. He's even said that sexual experiences are pretty normal, saying that although some girls get freaked out, the ones worth keeping around are pretty accepting of the whole thing.

3 Chromosome Disorder

This is an incredibly rare disorder, with only 25 documented cases. It is a genetic condition, but not much is known about it due to its extreme rarity. Most of the documented information about it comes from one case in Britain. The young girl, Ailsa Scobie, has spent four months, half of her life, in the hospital, and still there isn't much information about it. She has a very difficult time feeding, and cannot do it on her own. She needs to use a feeding tube and has many heart defects, as well as growth problems. It's also believed that she will have learning disabilities in the future.

Ailsa’s condition was first discovered when she was taken to the hospital due to her inability to feed, where they discovered two holes in her heart. The other children with the disorder also have suffered from learning disabilities and heart defects. At this point, it is not known what causes the disorder, but as more children like Ailsa receive treatment for it, the more information there will be for families in the future.

2 On All Fours

Uner Tan Syndrome is one that has received a bit of criticism since its emergence. It is characterized by people walking around on all fours and making guttural grunts and other sounds like that. Sufferers generally experience extreme mental disabilities as well. This was first proposed by the evolutionary biologist Uner Tan, who practices in Turkey. He had come across five members of one family walking around in this bear crawl manner, and all making the same sort of sounds. While investigating, he came across another family that was exhibiting the same behavior.

There are some folks who believe that this is not its own disorder, but rather a product of two other issues that exhibit themselves in this way. Neuroscientist Roger Keynes has argued that it is more an issue of infants who started off crawling using their feet rather than their knees. Then, due to balance issues caused by a congenital disorder, as they tried to stand up they found it difficult, so they learned how to quickly navigate on all fours. To this day the issue is up for debate.

1 "Vampire Disorder"

Hypohidrotic Ectodermal Dysplasia is a disorder characterized by the lack of sweat glands, missing teeth, and incredibly fine hair. The teeth that they do have are often pointed, which earned the disease the nickname the "vampire disorder." People that suffer from this must constantly manage their body temperature, and should probably avoid sunlight, due to their lack of sweating ability.

People with this disorder often have a small, narrow jaw and a depressed nose. They usually have fairly thin skin, with dark circles under the eyes. They are also more susceptible to eczema and extremely dry eyes. They are also more likely to develop asthma and other respiratory illnesses. The nails, facial, and pubic hair generally remain unaffected. Other than needing to constantly monitor their body temperature, individuals with this disease can lead fairly normal lives. If an infant exhibits irritability in warmer situations, or has peeling skin or dark circles under the eyes, it’s a good idea to have it checked out.

Sources: FirstSkinFoundation.org, DailyMail.co.uk, Debra.org, Itervis.com

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