Familial dysautonomia (FD) or Riley-Day syndrome is a genetic disorder that affects the growth, development, and survival of nerve cells. In most cases, this disorder attacks the autonomic nervous system; the nervous system of the body responsible for involuntary biological processes, like breathing, digestion, regulation of blood pressure and even sweating. It also affects a person’s ability to perceive sensations such as pain, heat, and cold. While less dangerous but no less tragic, individuals who suffer from this disorder cannot experience taste.
The talented attorneys at Nagel Rice, LLP are dedicated and focused on helping families with wrongful birth claims. Representing New Jersey families, we have a lengthy history of large settlements and trial verdicts. We are passionate about doing everything legally possible to help your family receive the help and assistance you will need in caring for your disabled child. If your child suffers from a discoverable genetic condition that was not properly screened for or discovered by your doctors, please contact our office to find out how we can help. We offer free consultations and a thorough review of the medical evidence to ensure that you get the top-notch legal help you need.
A Disease With Life-Changing Effects
Familial dysautonomia is incurable. The treatment for the disorder can only minimize the symptoms and complications from the disease that continue throughout the person’s life. Early symptoms include feeding difficulties in infants, poor growth (failure to thrive), lack of tears, lung infections and inability to control body temperature. Later in childhood, the disorder affects the ability to breathe which may lead to turning blue and fainting. Typically, milestones in development like walking and talking are delayed.
The disease is also associated with learning disabilities. About 33 percent of individuals who suffer from FD also have difficulty concentrating and short attention spans so severe that require special education classes and other academic intervention.
Into adulthood and throughout life, the genetic disorder leads to poor balance, abnormal spine development, increased risk of bone fractures, and kidney and heart problems. Affected individuals suffer from dizziness, blurred vision and fainting throughout their lives. Other complications include repeated lung infections, poor vision due to atrophy of the optic nerves and pain.
Because the disease is so devastating and only inheritable if both parents are carriers, genetic testing has been developed to identify adult carriers. There is also genetic testing available at various stages before the baby is born to determine if the child will suffer from FD after birth.
Some groups experience the occurrence of FD at higher rates than the general population. In fact, familial dysautonomia affects primarily people of Ashkenazi Jewish descent, occurring in 1 out of every 3,700 individuals in this population.
Since there are reliable genetic tests to determine the existence of the mutation in each parent as well as the fetus before birth, your OB/GYN should conduct testing of the parents at the time of conception or when the pregnancy is discovered to determine if there is a risk that the unborn child may suffer from FD. Your doctor should be alert to this risk even if you are not aware you are a carrier.
If it is possible that your child could suffer from FD because both parents are carriers, the baby should be tested as early as possible. This will allow the parents and medical professionals to make informed decisions about whether to terminate the pregnancy. Simply put, modern genetic testing allows you to know if your child will suffer from the disease before birth. Your doctor should help you uncover this information so that you can decide, knowing the life of suffering your child might endure, whether to carry the baby to term.
Help Dealing With FD
Dealing with the lifelong consequences of FD is immeasurable. In terms of costly medical treatments, the impact of the treatments that will be required to alleviate the suffering of your child is quite high. Not to mention the pain and suffering that you and your child will endure at every stage in life, given the severe limitations and restrictions on his/her daily activities. In a very direct way, your doctor’s failure to make adequate recommendations about genetic testing for both you, your partner and your child, can lead to a life of suffering for every member of the family.
If you or a loved one have suffered as a result of a medical mistake or other negligence, the law allows you to recover compensation for the harm your family has suffered. As your dedicated attorneys, we will put every effort into making sure you recover for both your economic and non-economic losses.
In cases of FD, these damages will include:
- Medical and health care costs you incur caring for your child
- The additional costs for education of your disabled child
- Any lost wages or income from having to take time away from your career to care for your child
The law also recognizes that the impact of having a child born with familial dysautonomia is not purely financial. Some of the most devastating consequences are in the intangible ones. This type of damage is called non-economic, meaning it can’t be directly measured in a dollar amount. These include:
- The pain and suffering of your child
- Your own emotional distress
- The reduction in the joys of life because of the limitations of the disease.
At Nagel Rice, we are well-acquainted with the pain and emotional distress brought about by genetic disorders. We are dedicated to fighting to help your family recover as much as possible from the devastation of having a disabled child. Please contact our office to get the legal guidance you need following the birth of a baby with familial dysautonomia.