Thalassemia
Serving New Jersey
Thalassemia, also known as Mediterranean anemia, involves a group of inherited blood disorders in which there is a defect in the production of hemoglobin. Hemoglobin is a protein which allows blood to carry oxygen and nutrients throughout the body. The problem producing hemoglobin results in anemia. Mild forms of thalassemia may not require any treatment. However, more severe types of thalassemia can be life threatening and require blood transfusions on a regular basis.
People who simply carry the thalassemia gene may not realize it because they often have no symptoms and function normally. However, if two carriers produce a child, there is a 25% chance that the child will be born with the more severe form of thalassemia. A simple blood test either before conception or during pregnancy can determine whether either parent carries the gene for thalassemia.
Hemoglobin consists of two different proteins, an alpha protein and a beta protein. People who have defective production of the alpha protein are said to have alpha thalassemia, and those with defective production of the beta protein are said to have beta thalassemia.
Standards of Care for prenatal diagnosis of Thalassemia
A careful history should be taken from all pregnant women seeking to identify risk factors for genetic disorders. Information should include the health status and presence of genetic disorders or carrier status of parents and relatives, as well as inquiry about ethnic, religious and racial background. If either parent is at increased risk for thalassemia based on their genetic background, a blood test should be offered testing for the thalassemia gene. According to the National Institute of Health, Alpha thalassemias most often affect people of Southeast Asian, Indian, Chinese, or Filipino origin or ancestry, and Beta thalassemias most often affect people of Mediterranean (Greek, Italian, and Middle Eastern), Asian, or African origin or ancestry. http://www.nhlbi.nih.gov/health/dci/Diseases/Sca/SCA_WhoIsAtRisk.html Therefore, a blood test for thalassemia should be offered to any individuals with ancestry or origin in any of the above regions.
Your rights in the event of a Prenatal Misdiagnosis (“Wrongful Birth”)
In order to recover, parents must prove that a medical provider’s negligence prevented them from learning that there was an increased risk that the fetus had a significant birth defect or genetic condition. They must also establish that they would likely have terminated the pregnancy had they been advised of the problem. In doing so, they are not in any way calling into question their love and devotion to their child – that relationship has already been established and will continue forever. Instead, they are merely acknowledging that if told of the defect or disease during the pregnancy, they would have likely chosen not to undertake the financial and emotional hardships involved in parenting a child with a lifelong disease. Because the child would not likely have been born if the medical provider was not negligent, these claims are often referred to as “wrongful birth” claims.
The New Jersey Supreme Court has held that if a wrongful birth claim is established, the negligent medical provider must provide compensation for the special medical expenses and other extraordinary expenses related to the child’s condition over the child’s lifetime. In addition, compensation must be provided for the emotional injury and anguish suffered by the parents in being compelled to take on the lifetime tasks and burdens of parenting a disabled child.
How We Can Help
Thalassemia can vary greatly in severity, with symptoms ranging from very mild to severe and debilitating. Children with thalassemia require heightened attention from their parents and medical providers so that serious illness can be prevented or lessened. Medical monitoring may be required over the course of such children’s lifetime, and in severe cases blood transfusions are regularly required.
The expenses involved in making sure that a child with a symptomatic form of thalassemia gets the best medical care possible over the course of that child’s lifetime can be enormous. There may be a significant difference in the treatment and services that private medical insurance, a public school system, or such programs as Medicaid will cover, and the most desirable state of the art treatment.; If your child has thalassemia, and you did not learn of this diagnosis in time to exercise a choice as to whether to continue the pregnancy, you may be entitled to compensation. Proceeding with a claim may be the only way to ensure your child has the financial resources to access the best available care.
Collectively, New Jersey medical malpractice lawyers Michael L. Weiss, Esq. and Robert E. Paarz, Esq. have presented over 30 prenatal misdiagnosis, wrongful birth type cases to juries, and have helped many families obtain the financial assistance needed to lessen or eliminate the financial burden caused by birth defects and genetic disorders. They are committed to using their knowledge and experience to help families that have been negligently deprived of their constitutional right to choose whether to continue a pregnancy involving an affected fetus obtain fair compensation. If you would like to discuss the possibility of pursuing a claim, please contact Weiss & Paarz, P.C., today.
Resources to find out more
More information about thalassemia can be found from any of the below websites:
National Institute of Health:
- http://ghr.nlm.nih.gov/condition=betathalassemia
- http://www.nhlbi.nih.gov/health/dci/Diseases/Thalassemia/Thalassemia_WhatIs.html
- http://www.genome.gov/10001221
