The appearance of medical care is not enough
May 14, 2013 - "Slow code" for many is a term in abstract debates on medical ethics, but for Brad and Jesi Smith, it became a well-defined fixture in their lives and the life of their daughter Faith, who has the disease Trisomy 18. The Smiths believed doctors always looked out for the best interests of their patients, but they were wrong.
"I thought that's why the medical field is there, to prolong life," Jesi Smith said.
The Smiths were used to fighting to prolong the life of Faith, but it became apparent that often medical professionals were their adversaries, not their allies. A "slow code" is the practice of doctors giving the appearance of providing life-saving treatment to patients, but in reality withholding effective care to ensure the patient dies. The term usually describes attempts at resuscitation, but the Smiths use it to describe the treatment of their disabled daughter by some of her doctors.
"They don't tell you what they are not providing you," Brad said. "Trying to convince a parent that doctors aren't looking out for their child is hard, we had trouble believing it ourselves."
Trisomy 18, also known as Edwards syndrome, is a genetic defect that can cause several medical problems in children. According to the Trisomy 18 Foundation, less than 10 percent of children with the condition survive to their first birthday. During one of Faith's medical crises, they sought the advice of presidential candidate Rick Santorum, whose daughter Bella also has Trisomy 18. When Brad showed some skepticism of Santorum's suggestions because doctors had not given the Smiths this advice before, Santorum grabbed his attention and changed his outlook forever.
"He got very serious and said if we didn't do this for our daughter, we were going to lose her," Brad said.
Like many parents with an unborn child diagnosed with a disability, the Smiths expected to confront suggestions that they have an abortion. After an abnormal ultrasound they were referred to a genetic counselor who pushed them to have an amniocentesis test to confirm a diagnosis of Trisomy 18. Knowing the test carries a small risk of miscarriage, the Smiths declined. They said after pushing the test, the geneticist then brought up abortion.
"We said this is not an option for us," Jesi said. "This is our daughter and we love her."
Jesi said they also refused the amniocentesis to make sure Faith would be treated like any other baby. They thought once their baby was out of the womb she would no longer be a candidate for abortion, and their fight against medical personnel would largely be over. They would soon discover it was just the first hurdle in a long race.
After her birth several days before Christmas in 2008, the Smiths discovered Faith had a hole in her heart that would require surgery. They said at first the cardiologist was upbeat about her chances, not knowing of her Trisomy 18. Once he became aware of it, their next meeting a couple of weeks later was completely different. The optimism was replaced with a refusal of care, requiring the hospital's ethics board to approve any further treatment. Jesi said they were lucky they could even attend the ethics board hearing to win approval for Faith; the Smiths have since heard stories from other parents who had their child's treatment options decided in secret.
"It's very hard to get your doctor to look at your child as an individual, instead of just seeing them as stamped with Trisomy 18," Jesi said.
Faith had already overcome tough odds. Her toughest hurdle yet would come two years later. Over Labor Day weekend in 2010 Faith became very sick. After treatment and recovery, a month later she again was in the same poor condition. The situation was dire, but fortunately the Smiths were not alone.
As Faith was lying in the hospital, Rick Santorum happened to be in Michigan for a political event and was using the radio station where Brad works. The Smiths had met him earlier in the year, and Brad asked him for any treatment advice he could give. Santorum was very familiar with Faith's problems, many of which were caused by breathing issues that his daughter Bella faced. Brad said he gave him several suggestions, including simple and relatively cheap solutions like having oxygen available and a CPAP mask.
Despite Santorum's stern warning that they would lose Faith if his suggestions weren't acted on, their doctors refused to take the advice seriously. Even pleas from their home nurse to get doctors to prescribe Faith a CPAP mask, a relatively inexpensive solution, were ignored. On Election Day 2010 the Smiths discovered Faith pale and catatonic in her crib. After again being unable to receive adequate treatment, a doctor essentially told them they needed to go to another hospital.
The Smiths spent their 2010 Thanksgiving Day at a new hospital, but it was truly a day to be thankful. It was clear to her new care providers that sleep apnea was causing her to have carbon dioxide poisoning. Brad said it was so serious that during a sleep study Faith's nurse had a fit and wanted to stop it on the spot to provide her with immediate help. Faith finally received the care she needed: jaw distraction surgery to keep her airway open and a CPAP mask.
"These were obvious problems, even we can pick it out now," Jesi said.
Faith's experience has led the Smiths to believe that some hospitals have an 11th commandment that requires disabled children purposefully not receive effective medical care. They said they are not alone. They had a difficult time convincing one of their doctors that a disabled child would be "slow-coded" to death until the doctor watched one of her other patients die after not receiving treatment at another hospital. Jesi said the Smiths could have offered that boy more advanced care at their home than the other hospital was willing to provide.
Brad and Jesi have been forced to become highly knowledgeable about their daughter's condition. Brad said stories about Trisomy 18 in medical journals almost seem like eugenics rather than medicine. They have been active in reaching out to other parents through resources like Facebook. Jesi said it's difficult finding a large community for support, however, since abortion and "slow codes" claim the lives of many children who would otherwise be alive. They said without help from other Trisomy 18 parents, Faith would not be alive today. Brad and Jesi are happy to return Rick Santorum's favor by advising other parents seeking help for their children.
"We know they are not going to be given any hope," Brad said. "Almost everyone we talk to has a negative story."
The Smiths are not content to merely provide advice, but are seeking to make sure hospitals and doctors can no longer deceive parents. They are currently lobbying for passage of the Medical Good-Faith Provisions Act, which would require hospitals with a futile care policy to have it in writing and provide it to parents when requested. Brad said he hopes the proposed law will require transparency in hospitals, rather than allowing them to stall parents in a deceptive way until it's too late to find other treatment options. The Smiths shared their story with legislators in front of the Michigan House of Representatives Health Policy Committee on April 30. They are optimistic of the bill's chances for passage.
"It's always helpful to have a little girl as cute as Faith to sit with you during hearings," Brad said.
For more information about Faith and treatment she has received, you can follow the Smith's blog Little Faith to Big Faith. For more information about the Medical Good-Faith Provisions Act, click here.