When Your Organs are In the Wrong Place: 8 Things to Know About Heterotaxy Syndrome

When Your Organs are In the Wrong Place: 8 Things to Know About Heterotaxy Syndrome

A new baby is a blessing and stressful–birth defects make it even more so.

Most new parents don’t think to question whether their child’s organs are on the correct side of their body, when they’re born. But parents of children born with heterotaxy syndrome however, likely have a lot of queries.

Related: Why This Baby Got Blistering Burns on Her Face

Heterotaxy syndrome is rare. It affects about 1 in 10,000 people worldwide and can be costly to treat, as this viral tweet from American mother Alison Chandra shows. (Chandra’s son was born with the syndrome and recently underwent open heart surgery, to the tune of $231,115, before insurance).

Here are 8 things to know about the rare disorder:

1) It’s a Genetic Disorder

Birth defects can be costly to treat.

Heterotaxy is a rare birth defect caused by a genetic disorder. It involves the heart and other organs, and literally means ‘different arrangement’.

2) It Affects Your Organs

If you have heterotaxy, or know someone who does, it means that their organs are placed in different places in the body, compared with a person without the disorder. You might also have multiples.

Related: This Baby Was Born With Her Organs Outside Her Body

In the case of Alison Chandra’s little boy, his body has 5 spleens and two left lungs, and his liver, gallbladder and heart are in the middle of his body, while his stomach is on the right side instead of the left.

3) It Can Also Affect the Skeleton and Other Body Parts

People with the syndrome could also have irregularities in their skeleton, central nervous system and urinary tract.

4) It Can Come With Multiple Heart Defects

There are two types of the syndrome, and both involve heart defects, either with the valves or the heart’s “electrical system”.

5) It Requires Lifelong Care

Birth defects can be costly to treat.

This condition obviously isn’t something you can cure overnight. It requires lifelong care from a cardiologist.

6) There Are Symptoms

Some conditions that affect the inside of your body aren’t so readily apparent on the outside. With heterotaxy syndrome, symptoms include having blue or purple tinted fingernails and skin, difficulty breathing, difficulty feeding and eating, and being abnormally sleepy or unresponsive.

A baby who has these symptoms doesn’t necessarily have this condition, but all are reasons to immediately seek a doctor for your child.

7) It’s Probably Underdiagnosed

If you’re feeling fine, there’s no need to rush off to the doctor to verify if you have heterotaxy syndrome or not. However, according to the U.S National Library of Medicine, this condition is likely underdiagnosed, and may be more common than experts believe.

Some people may have a mild version and have never had enough complications to seek an answer and treatment.

8) It’s Sporadic

When one child is born with this syndrome, it doesn’t mean that all children in the same family will have it. It often only hits one family member. How can you get it? The parents of someone born with heterotaxy syndrome each carry one copy of the mutated gene, causing the condition. Both need to carry it, to produce a baby with the condition.

Photo credit: Ice/Bigstock; ITLPhoto/Bigstock

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