What Is Myotubular Myopathy?

Myotubular Myopathy is a group of rare, inherited diseases that affects the cell structure of muscles. The symptoms can range from mild to severe. At its most severe, babies born with the disease are unable to breathe on their own and require a ventilator; they are bound to a wheelchair and need significant assistance for daily living. Even babies with a mild form of this disease have trouble breathing and are susceptible to flu, pneumonia, and other respiratory problems. 

There are three forms of myotubular myopathy; genetic testing exists for only one form of the disease. If you have a family history of myotubular myopathy, you can be tested to see if you are a carrier, and there is a prenatal test to see if the fetus also carries that mutation.

Myotubular Myopathy and Wrongful Birth Cases

If you were not informed of your child’s myotubular myopathy disease before his or her birth, you may have a wrongful birth case. An error may have occurred in one of several steps in the process:

– Your doctor failed to read or interpret test results properly (e.g., AFP, ultrasound, amniocentesis) or did not advise you of your risks for giving birth to a baby with this condition.
– The medical lab failed to perform the appropriate tests or failed to report the results.

In both of these instances you were deprived of the choice to terminate the pregnancy or were unprepared to care for your disabled child. This may be grounds for a wrongful birth case. 

Our Proven Record of Success

At O’Connor, Parsons, Lane & Noble, we have a proven record of helping parents who were failed by their prenatal healthcare providers. One such client wanted to receive genetic testing for myotubular myopathy (MTM), a debilitating disease for which she was a carrier. Unfortunately, her doctor failed to conduct the correct testing and her child was born with MTM.

In the middle of that personal tragedy, the family went to OPLN. Attorney Paul O’Connor was able to help them win a $28 million verdictfor medical expenses and emotional damages — the largest of its kind in New Jersey history.

We know that no parent wants to make the heartbreaking decision about whether to terminate a pregnancy or bring a severely disabled child into the world. But parents do have the right to know the facts, and doctors and medical laboratory professionals have a responsibility to perform proper tests and inform the parents of the results.

If your baby was born with myotubular myopathy contact O’Connor, Parsons, Lane & Noble. The initial consultation is free, confidential, and you are under no obligation. Contact us online or call at 1-908-251-9368 or 1-800-586-5817

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