Parents of daughter with cystic fibrosis sue doctor, saying she should never have existed

The parents of a little girl with cystic fibrosis sued an OBGYN and won a $2 million settlement after claiming their daughter’s existence caused them to lose their ability to enjoy life.

Elizabeth and Eric Trotter filed a lawsuit — on behalf of themselves and their second-born daughter, Madelyn — in 2020. Madelyn was diagnosed with cystic fibrosis (CF) shortly after her birth in 2018. Her parents claim that had they known they were both carriers of the gene, they would not have become pregnant with Madelyn. Elizabeth’s doctors failed to test her for a CF gene during her first pregnancy as well as her second.

Cystic fibrosis is a condition caused by a gene mutation inherited from both parents. It causes a thickening and stickiness of the mucus in the body, potentially leading to problems with respiratory health, digestion, and fertility, along with other health concerns. In the 1950s, most children with CF did not survive beyond early childhood. Today, the median predicted age of survival for people with CF is 61 years. That age continues to rise.

What the lawsuit alleged

According to the lawsuit, doctors failed to run CF carrier testing on Elizabeth during her first pregnancy, and if they had, Elizabeth would have known she was a carrier. She, therefore, would have had her husband tested as well and learned he was also a carrier. If they had known they were both carriers (and consequently had a 25% chance of having a child with CF), they would not have become pregnant with Madelyn, and she would never have existed. It is unclear if they would have aborted Madelyn if CF testing had been carried out when Elizabeth was pregnant with her.

The Trotters alleged they “were deprived of the right to make an informed decision regarding whether to conceive a child.” The suit continues:

… Madelyn Trotter… has suffered, and will continue to suffer throughout her life, extreme pain due to her condition.

… has required, and will in the future require, significant medical treatment, surgeries, therapies and procedures to treat her condition.

… has been forced to endure a life with Cystic Fibrosis, wherein she has suffered, and will continue in the future to suffer, the loss of the enjoyment of all of life’s activities, including the enjoyment of her family and friends and her personal, recreational and social relationships and activities.

They also said they experience “mental and emotional injury” as well as “a diminished ability to enjoy life’s activities and will continue to experience it in the future.” In addition, they claimed they will have to care and assist their daughter “for the rest of her life, thereby requiring them to withdraw from or limit their own activities and responsibilities, including their ability to engage in employment, pursue career opportunities and enjoy the pleasures of raising a normal, healthy child.”

Madelyn was just two years old when the suit was filed. She is now six. As she grows up, she will come to understand the full philosophical and ethical depth of the lawsuit in regard to her life and her parents’ wishes, and, as a result, she may experience emotional turmoil and suffering.

In essence, the lawsuit claimed that Madelyn’s life is inferior to that of a “healthy” child, that she should not have been conceived, and that she will regretfully live a long life. These claims are both degrading and offensive to their daughter and everyone with CF. Beyond insulting, it’s cruel, heartbreaking, eugenic, and selfish.

The decision to have a child is the decision to make sacrifices for the good of another and to take on new responsibilities and challenges. Parenthood should change how a person makes choices for the betterment of themselves and their children. Health is never guaranteed, and a healthy newborn is not synonymous with a long, pain-free life.

Second, the Trotters have blamed their young daughter for their decisions regarding their careers and lifestyle, and have burdened their child with the knowledge that her existence caused such turbulence to their lifestyle that it would have been better for them if she didn’t exist. Yet, people with CF live independent adult lives, get married, have careers, and even have children of their own.

But worst of all, they claim Madelyn is ‘paying the price‘ for the doctors’ error by simply existing, and say she shouldn’t exist at all. When Madelyn is old enough to truly comprehend all of this, what might this do to her emotionally?

The Pro-Life Reply to: "Babies with Disabilities Are Better Off Aborted"

‘A life-changing mistake’

After the lawsuit was settled, the Trotters went to the press.

CT Insider stated that the doctors made a “life-changing mistake” in failing to test Elizabeth for a CF mutation. But what if this was actually life-saving? If the testing had been done, would Madelyn have been aborted? Would she ever have been conceived at all?. What if this “mistake” was really a miracle. Even with challenges, surgeries, and medications, Madelyn’s life is worth living. She is a valuable, beautiful human being.

Madelyn was diagnosed through the newborn screening test and was in the NICU for about a month. Her parents were understandably “scared to death.” She struggled with feeding, was diagnosed with”failure to thrive” (common in babies with CF), needed a feeding tube, and was also diagnosed with liver fibrosis.

“Poor Maddie had all these things going on with her and it was just one thing after another, after another, after another,” Elizabeth said. “That’s not even talking about the actual cystic fibrosis. This is just part of all of this.”

Once she was home, her parents hired nurses to help care for her. Six years later, her health has improved, but her mother says they still plan their lives around her care. Madelyn needs twice-daily respiratory therapy treatments and daily medications, including pills she needs to take every time she eats. Her liver has mostly recovered.

Elizabeth said she stopped working to care for Madelyn full time, “setting up appointments, making sure she gets her daily medications before going to school, being extremely cautious of catching illnesses and more.” She said having “sleepovers at a friend’s house” can be hard to “coordinate.”

But Madelyn goes to school and sleeps over at friends’ houses. This sounds like a fairly “normal” life. It’s a disservice to Madelyn to paint her life as that of a victim instead of a survivor.

A life with cystic fibrosis is worth living

When I was pregnant with my first child, doctors failed to run CF carrier testing. When my child was diagnosed at six days old with CF, I was also blindsided — and “scared to death.”

But my child’s life is a miracle, just as Madelyn’s is. My child is an A student, is taking college courses in high school, is on the swim team, is in the drama club, is learning to drive, is looking at colleges, and is living a very teenage life. My child also requires respiratory treatments twice daily like Madelyn, goes to frequent doctor’s appointments like Madelyn, undergoes multiple blood draws, liver scans, lung CT scans, and takes multiple pills twice a day, as well as digestive enzymes at every meal. Yes, sometimes it’s inconvenient. Sometimes it’s tough being “different.” We take extra precautions for protection from germs, and make sure that meds and treatment supplies are sent to sleepovers. My husband and I both work and have three other children.

It’s a busy life — but it’s a good life, and to think it would be better off without our oldest child is unfathomable. To think that never existing is better than living is prejudiced. Even if our child didn’t do any “normal” activities, life would still be worth living.

And Madelyn’s life is worth living, too.