Beth Trotter is the type of person who likes to plan for significant life changes. So, when Trotter, 38, became pregnant with her first daughter in 2016, she agreed to all of the genetic tests available to a first-time mother.
Trotter and her husband were overjoyed when the long-time obstetrician-gynecologist confirmed that her bloodwork was normal.
She gave birth to a healthy baby girl whom her husband described as an Olympian who was hitting milestones like talking at five months and walking at eleven months. She was a fun, happy, and curious baby, so Trotter said it was natural for her to want more children.
Two years later, she became pregnant again. To their surprise, their second daughter was born with cystic fibrosis, a progressive genetic disorder that causes breathing and digestive issues.
Unbeknownst to them, Trotter’s OB-GYN had ordered some of the genetic tests but not all of them, and the error was discovered after their second daughter was born.
The Salem family sued the facility, and the case was quickly settled for $2 million in 2020. Nonetheless, Trotter claimed that the doctors’ error prevented them from making an informed decision about their family’s health.
“I’ve never been back to that OB-GYN office. I never will, and I hope I’ve helped others avoid having this happen to them,” she said.
OB-GYN Services of Norwich did not respond to CT Insider’s multiple requests for comment.
The Trotter family’s experiences are frequently referred to as “never events,” a term coined in 2002 to refer to preventable medical errors that should not occur, such as operating on the wrong patient.
According to the nonprofit National Quality Forum, which coined the term, the definition has grown to include 29 serious reportable events of varying severity, such as using contaminated drugs, medication errors, failing to follow up on lab tests, and more.
Most never events are rare, and reporting on these mistakes varies by state, but a Hearst Newspapers investigation discovered more than 650 cases of surgical items being unintentionally left behind in 2022, according to data from 14 states and the District of Columbia.
According to state data, pressure ulcers are the most commonly reported adverse events in Connecticut hospitals and care facilities, followed by patient falls.
Lisa Freeman, executive director of the Connecticut Center for Patient Safety, became involved in patient advocacy after what she described as a never-before-seen event occurred in 1991: a major surgical error on her husband’s spine left him paralyzed and brain damaged. In 1998, she settled a lawsuit filed against the doctors who performed the surgery.
Freeman was suddenly the primary caregiver for their young children and husband, and she learned about the health-care and legal systems through firsthand experience. He died in 2010 of respiratory failure caused by a spinal cord injury he sustained 19 years before, leaving a devastating impact on her entire family.
In 2004, Freeman established the Center for Patient Safety to provide experience-based lessons on how patients can advocate for themselves in health care settings. She also works with others who have been affected by preventable medical errors, such as the Trotters.
She stated that the state makes an honest effort to quantify and report adverse events, but many mistakes are missed or go unreported because it is up to the patient to report them, or mistakes are resolved quickly enough to avoid negative health outcomes.
For example, Freeman stated that she learned how to reset one of the medical pumps whenever her husband was in the hospital because “nobody would show up” when alarms sounded.
“The consequences are far greater than we realize, and we frequently fail to consider them. We do not provide a support system for the other people who have been affected by what has occurred, which can be quite profound,” Freeman explained. “We don’t talk about it either, and that’s a big part of the problem.”
A life-changing mistake
Trotter met her husband, Erik, in 2007, but they did not start dating right away. They got married in 2014.
They were initially hesitant to have children because they were in their late 30s and early 40s and were aware that age influences a healthy pregnancy.
Trotter stated that she had previously suffered a miscarriage, which made them hesitant to try again. So, when she got pregnant with “rainbow baby Paige,” as they called her, she wanted to take every precaution.
According to the American College of Obstetricians and Gynecologists, prenatal genetic testing, including screenings and diagnostic tests, is an optional service provided by physicians to pregnant patients.
Screening tests, in particular, aim to inform expectant parents about the likelihood that their baby will have a genetic disorder and are frequently offered to patients during each pregnancy.
Before or during pregnancy, blood or tissue samples are typically used for testing, as are ultrasound exams. A follow-up diagnostic test after a positive screen helps to confirm the results.
Trotter stated that she had been receiving reproductive care from OB-GYN Services in Norwich for 20 years prior to her first ultrasound with them on June 17, 2016.
According to her lawsuit, the attending doctor, Dr. David Kalla, stated in his notes that Trotter accepted all of the genetic tests offered, including the QNatal test for common birth abnormalities and carrier screenings for cystic fibrosis, fragile X syndrome, and spinal muscular atrophy. Trotter went to Quest Diagnostic after the ultrasound to have blood drawn for the tests she expected.
Court documents reviewed by CT Insider show that Dr. Stephen Briggs, another clinic provider, ordered the QNatal test from Quest Diagnostic but not the carrier screening exams for the other abnormalities, such as cystic fibrosis.
A few weeks later, Trotter received a call from OB-GYN Services informing her that her bloodwork was normal, but without clarifying that the results referred to only one of the tests she requested, as per her complaint.
Trotter was also given a paper copy of the results, but she claimed they never looked at it because it revealed their baby’s gender, which they wanted to keep a secret until a gender reveal party. She had Paige in January 2017 after what she called a “textbook pregnancy.”
When Trotter became pregnant with her second daughter, Madelyn, two years later, “it was a different pregnancy right from the get-go.” She had severe morning sickness and other health problems such as respiratory infections, high blood pressure, and preeclampsia.
She went to the same OB-GYN service, but the staff did not offer or perform a cystic fibrosis, fragile X, or spinal muscular atrophy screening, according to her complaint. Trotter explained that she understood why the providers did not offer another round of genetic testing during the second pregnancy, given that the first results were normal.
Madelyn was born six weeks early, weighing slightly more than five pounds. Doctors induced the birth after weekly checkups revealed a gradual decline in Trotter’s health.
Although Madelyn was breathing on her own, Trotter reported that she was very jaundiced and would regurgitate a “green milky substance” when fed, so she was admitted to the neonatal intensive care unit. Trotter tried not to think negatively, but not having an answer was difficult.
Erik Trotter remained optimistic, but each visit revealed that something was wrong with their baby. He stated that when they asked the doctors for an update, he could tell by their body language that they knew what was wrong but needed more confirmation or simply “didn’t want to tell us.”
The state-mandated newborn screening test detected it. Erik Trotter recalls sitting at his desk at his state trooper station when he received the call with Madelyn’s diagnosis: cystic fibrosis. He took a moment to prepare for the news and grabbed a pen and paper to jot down whatever the doctor said, but he couldn’t get past the first word before dropping the pen in disbelief.
According to the national Cystic Fibrosis Foundation, cystic fibrosis is a progressive genetic disease that affects the lungs, pancreas, and other organs. There is currently no cure. Cystic fibrosis affects approximately 40,000 children and adults in the United States. Treatment is available to help manage symptoms such as sticky, thick mucus that clogs the airways.
Children with cystic fibrosis inherit the condition from both parents, who each have one copy of a malfunctioning gene. The Trotters stated that if they had known about the gene mutation, they could have tested Erik Trotter to see if he was also a carrier and made a more informed decision for their family’s future.
With the diagnosis in hand, Erik Trotter had to break the news to his wife, who was still recovering from childbirth. They initially thought the diagnosis was a mistake because they had completed the genetic testing in 2016 — that is, until a team of doctors arrived in masks and full gowns to limit Madelyn’s exposure to cross infections.
Madelyn spent about a month in the NICU before the Trotters could bring her home, and they “were scared to death.”
“This is a newborn baby, and she needs to swallow enzymes with applesauce.” “They’re not even allowed to have anything other than formula or milk until a certain age,” Beth Trotter explained. “She’s not holding anything down, like I think that she barely gained an ounce.”
Less than two weeks later, Madelyn was back in the Hartford NICU. According to Erik Trotter, Madelyn would aspirate food into her lungs and cover her trachea, effectively choking her. He claims she was labeled a “failure to thrive” for a long time before she began to improve.
Because Madelyn was unable to feed through her mouth, doctors had to insert a gastrostomy tube to deliver nutrients and medication directly into her stomach. She was also having severe bowel problems and needed to have another surgery.
When Madelyn was four months old, doctors performed a liver biopsy, which revealed stage two liver fibrosis, a condition caused by chronic inflammation that impairs normal liver function.
Beth Trotter stated that they initially believed she would require a liver transplant, but the condition has since been treated with medication.
“Poor Maddie had all these things going on with her and it was just one thing after another, after another, after another,” Beth Trotter told me. “That’s not even getting into the actual cystic fibrosis. This is only a part of it.”
Madelyn also underwent fundoplication surgery to help with her stomach issues. She remained in the hospital for another five months. The Trotters said they drove up from Salem almost every day to see Madelyn while managing work schedules and raising their toddler at home.
When they brought Madelyn home, they hired nurses to help care for her because her care required 14 medications and twice-daily breathing treatments.
Challenges continue
Shortly after Madelyn was born, the Trotters returned to the OB-GYN to inform them of the diagnosis and request that they double-check the results of the 2016 genetic testing. They stated that based on the staff’s reaction and lack of explanation, they believed it was the first time the clinic had noticed the error.
Beth Trotter felt betrayed and angry. The Salem couple filed the lawsuit on their and Madelyn’s behalf, alleging two counts of medical malpractice against Dr. Stephen Briggs and Dr. David Kalla of OB-GYN Services, after hiring Reardon Law Firm, P.C. in New London.
According to court documents reviewed by CT Insider, Kalla was the physician who wrote the note in Trotter’s case. However, according to the documents, Briggs requested that the QNatal test be performed at Quest Diagnostics rather than carrier screening.
The lawsuit was filed on August 27, 2019, and the Trotters withdrew it in December 2020 after reaching an agreement for all available insurance coverage, $2 million, with no confidentiality clause.
The Trotters’ attorney, Kelly Reardon, stated that the agreement also included a meeting with the physicians.
It’s been six years, and while things have improved with medication and care, Madelyn’s challenges continue. Everything the Trotter family does revolves around her care.
Beth Trotter described her daughter’s daily symptoms as dry and wet coughs and stomach pain. She takes several medications to treat her symptoms, including nebulized albuterol twice daily and nebulized mucus-thinning medication. Madelyn is also wearing a percussion vest, which vibrates against her chest and back to help loosen the mucus in her lungs.
Madelyn’s liver is being treated three times a week with gallbladder medication, a fat-soluble vitamin, an acid reflux reducer, and an antibiotic for asthma symptoms, according to her mother.
She also takes Trikafta, a prescription medicine used to treat cystic fibrosis, twice a day, and digestive enzymes whenever she consumes anything containing fat. Despite the fact that her liver has mostly recovered, they must continue to monitor it with regular blood tests and an abdominal ultrasound every year.
Despite the fact that her liver has mostly recovered, they must continue to monitor it with regular bloodwork and an annual abdominal ultrasound.
Beth Trotter stated that she stopped working to serve as Madelyn’s full-time care coordinator, which included scheduling appointments, ensuring that she received her daily medications before going to school, being extremely cautious of contracting illnesses, and other tasks.
She said Madelyn has had a few hospital visits over the years, but no major surgeries since infancy. Madelyn’s gastrostomy tube will be removed soon, and she will be able to swallow pills, but some serious side effects of the Trikafta cause mood swings that can be difficult for anyone to manage.
Madelyn is a “normal” child in every way, but Beth Trotter admits that the typical fun activities that define childhoods, such as sleepovers at a friend’s house, can be difficult for them to coordinate.
“I want to say, ‘Look, this is exactly what I was talking about,” Beth Trotter said. “Will you be here when all of this goes wrong? Or when she needs to be hospitalized? “When my other daughter asks tough questions, like, ‘Do you love Maddie more than you love me?'”
