Amy Clark, Supermom: Changing the Law in Illinois
Timothy Clark was, like his older brother Brandon, born with Angelman Syndrome because Amy Clark was never told by her doctors that test results confirmed she was the carrier of a hereditary genetic disorder.
The two boys are profoundly mentally disabled will and need special assistance for their entire lives.
Hurley, McKenna & Mertz helped change the law in Illinois so that parents of profoundly disabled children can recover damages for emotional distress when medical negligence leads to the wrongful birth of a child.
Amy Clark Needed Help
Before she contacted HMM, Amy Clark was weary from her battle to discover the truth. She was tired from having to explain her family’s situation to doctors, insurance companies and lawyers. She needed answers to her questions: How could she have given birth to a second child with the same severe genetic disorder, when her doctors had told her there was no chance of that happening? How could she care for a second child who, like her first, would require twenty-four-hour-a-day attention and supervision for the rest of his life? How would she and her family survive financially?
Nobody was willing to help Amy find the answers to these questions—until she found HM&M.
A Struggling Mother Seeks Reassurance from Two Doctors
Amy Clark’s first son, Brandon, was born in 1997. Early in Brandon’s infancy he demonstrated severe developmental delays. He was unable to roll over, did not learn to speak, laughed for extended periods of time without reason, and would not sleep.
Amy tried to find out what was causing her son’s severe delays. In 1999, she sought counseling and genetic testing from a geneticist at a Chicago hospital. After ordering a series of laboratory tests on Amy and her son, the geneticist informed Amy that Brandon had symptoms of Angelman Syndrome, a neuro-genetic disorder that occurs in one in 15,000 live births. Characteristics of the disorder include developmental delay, lack of speech, seizures, and walking and balance disorders. Individuals with Angelman Syndrome will require life-long care.
Most cases of Angelman Syndrome are not inherited, but occur because of a random genetic change during the formation of reproductive cells or in early embryonic development. Affected people typically have no history of the disorder in their family. In some cases, however, the genetic change responsible for Angelman Syndrome can be inherited. For example, it is possible for a mutation in the UBE3A gene to be passed by a mother, who herself has no obvious disabilities, to her children. When a hereditary genetic abnormality like this is the cause of Angelman Syndrome, the parents have a 50% chance of conceiving a second child with Angelman Syndrome.
Amy was deeply saddened when the geneticist confirmed that Brandon had a permanent developmental disability. Still, Amy was relieved when her geneticist confidently told her that all the laboratory tests had confirmed that Brandon’s Angelman Syndrome was not hereditary. The geneticist advised Amy that she and her husband could have more children and not worry about those children having Angelman Syndrome.
Amy and her husband had always dreamed of having a large family. However, because Brandon’s condition required so much of Amy’s time and attention, she felt that she needed to be extra cautious that his condition was not hereditary before having another child. In 2001 the Clarks sought a second opinion from a geneticist at another Chicago hospital. That geneticist never ordered new laboratory testing for Amy or her son, and never sought out the test results from the first geneticist. Instead, the second geneticist assured Amy that since the first geneticist had done all the tests available and said those tests were negative, then Amy had a less than 1% chance of conceiving another child with Angelman Syndrome. Relieved by this advice, Amy and her husband planned to have another child.
A Second Child is Born With Angelman Syndrome
Timothy Clark was born in March of 2001. As he grew, Amy noticed that Timothy was experiencing many of the symptoms associated with his older brother Brandon’s Angelman Syndrome — he had the same jerky and unpredictable motor movements, he was inappropriately happy, he was not learning to speak, and he wouldn’t sleep.
Amy was frantic as she continued to observe signs that Timothy had the same genetic disorder as his older brother Brandon. She searched for answers from her prior doctors, but got nowhere. Amy begged her first geneticist for the supposedly “normal” test results, but he claimed he could not find them. Amy finally contacted the lab that had performed the original genetic testing, and after she demanded her test results, she learned the horrible truth over the phone from a clerk at the lab—her test result from many years before was not negative. It was positive for a hereditary genetic mutation that gave Amy a 50% chance of having a child with Angelman Syndrome.
Amy was devastated by the news and all that it meant: that the doctors she had trusted for genetic advice and counseling had been wrong all along, that their lack of attention to detail contributed to their mistakes, and that she and her family would pay a high price for their malpractice. This realization set her life and her family’s life on the course that ultimately led them to Hurley McKenna & Mertz.
Finding Hurley McKenna & Mertz
Amy and her family were living in Arizona when she decided to contact a lawyer for help. Amy was referred to HM&M by a family friend who was an attorney living in Chicago. After an initial phone call where she presented the circumstances surrounding her case, Amy made the journey to Chicago to meet with Chris Hurley and Mark McKenna.
As trial lawyers who at the time they met Amy Clark had decades of experience handling large medical malpractice and personal injury cases, Chris and Mark thought they had seen it all. However, they were shocked by Amy’s story, and by what had become of Amy’s life as a result of the malpractice committed by her doctors.
Amy described how caring for two children with Angelman Syndrome has been overwhelming. Because Timothy is unable to control his upper body, and because he does not demonstrate age-appropriate behavior, he will strike his mother Amy—at times, hard enough to bring tears to her eyes. Caring for children with Angelman Syndrome makes everyday tasks immensely difficult. Sensory impairments make it impossible for Timothy to feed himself and caretakers must place food directly in his mouth in order to assist him in eating. Neither Brandon nor Timothy Clark will ever be able to live independently, and they will require constant care and supervision. Chris and Mark listened as Amy described how she spends every day of her life caring for two severely disabled sons, who will grow to full size but have the minds of infants.
From the beginning Amy knew there was a difference between HM&M and all of the other professionals from whom she had sought help and answers. Chris and Mark listened to her story with compassion, asked thoughtful questions, and were mindful of her financial situation and the heavy burden she faced caring for two severely disabled children.
When you have a child with cognitive, social, emotional and physical disabilities you feel as if the rest of the world has turned its back on you because they don’t understand. Chris and Mark understood right away and had compassion. They were very genuine and honest and truthful and that was really important to me.
Chris and Mark knew Amy’s case would be an uphill battle. When Amy came to HM&M, Illinoois law did not give Timothy the right to sue for compensation for his disability. Further, any remedy available to Amy in court was limited to a “wrongful birth” case—a rare cause of action in Illinois at the time that only permitted parents of a disabled child conceived due to erroneous genetic advice to sue for the costs of caring for the child’s disabilities until the age of 18. Under existing law Amy herself would have no right to seek compensation for her damages as a result of the malpractice of the geneticists.
Chris and Mark decided that if anyone they had ever met needed their help as trial lawyers, it was Amy Clark and her family. HM&M took Amy’s case and, knowing the stakes, aggressively moved to get the Clark’s the compensation needed to care for Timothy, while working to change the law to get compensation for the other victims of negligent genetic advice—parents such as Amy Clark.
Changing the Law in Illinois
It took ten years to change the law but it was worth the wait. You can read the Illinois Supreme Court’s decision here.
The ultimate reward came when the firm brought Amy’s case to the Illinois Supreme Court. Because the facts supported it and they had a drive and desire to help others in the same situation, Chris convinced the Court to change the law in Illinois so that parents of profoundly disabled children could recover damages for emotional distress when medical negligence led to the wrongful birth of a child.
The work of Hurley McKenna & Mertz changed the Clark family’s lives--and by changing the law, also changed the lives of many others.