Lorina Troy’s path from the Horrible Journey of misdiagnosed child to the White House

Zaktualizowano: 27 maj 2020

The story of looking for the diagnosis of Lorina Troy's child shook public opinion not only in the US but also worldwide. Atypical symptoms in the form of baby’s swollen head caused that after a routine visit to the doctor, the life of the family turned into hell. The woman and her husband were wrongly accused of committing family violence. Older children were taken to care centers, and innocently accused parents began a three-year battle with the help of lawyers and medical specialists wanting to seek answers. After the happy final, the Texan family’s history was on top of national media, including People magazine and reportage series of NBC News investigations “Do No Harm”. Inspiration born by extremely painful struggles made Lorina Troy write and publish the book: "Miracles of Faith", which attracted the attention of hundreds of parents in a similar situation not only in the US but also on other continents. Somehow, I came across an article about her case on a foreign facebook group and today she agreed to share her story with the Polish community of the Undiagnosed. "- I would like to share my story with parents struggling for a diagnosis if their kids in all countries where I can reach public opinion – she says.

I am perfectly aware that the first question can evoke unwanted memories about the starting point of a nightmare lasting several years. I am asking about the circumstances that started the black series, I would also like to add that we can leave this question if it hurts too much. However, painful memories seem to have much less power than openness and courage in Lorina’s personality. Time does not make all wounds disappear, but at least heals them.

-It all began in the moment when the pediatrician noticed the above-average head size of my recently born son. Doctors decided to take my baby to hospital and do some additional medical tests. Although magnetic resonance imaging showed a fluid in the child's brain that should not be there, the doctors still were strongly convinced that increased head size of the baby was the result of injuries caused by domestic violence. I used all sorts of persuasion to convince the medical staff that our son's physical well-being was never violated.” - Lorina shares a sad record in her memory. She was begging for an alternative perspective in the eyes of specialists: "Is it certain that no purely medical reason can be the culprit, only me and my husband?" The specialist in pediatrics and neurosurgery gave only an evasive reply: - It's possible, but the child can't speak. For the baby’s safety, we should provide him with safe care."

It's hard to imagine the shock and trauma that one feels when going to the clinic hoping to explain the disturbing symptoms and coming back with being a suspect in child abuse investigation. Soon both the youngest member of the family and his older but still little brothers were taken to care centers. Lorina's husband - Jason was accused of being an abuser, which could result in spending 5 to 99 years in prison. The couple were forced to sell their home and most valuable assets, only to be able to pay lawyers. In one moment, the young woman's world collapsed and she faced the vision of losing everyone who was the closest person in the world for her heart: a beloved partner and three children. Putting myself in her shoes, I am beginning to understand the depth of the title of her book "Miracles of Faith". For people unfamiliar with history, the title may seem like a religious or marketing slogan. However, in the case of a brave Texas resident, the fact that in the face of such a perspective she was able to maintain self-control and consistency in seeking answers is an undeniable miracle. Reports on the condition of her two older sons, prepared by staff in care centers, provided information that boys were suffering from major depression and one of them had lost about 10 kilos. Life with the imminent loss did not last a couple of months, but longer than thirty-six months. The search for specialists in the field of neurology and pediatric neurosurgery being the last resort extended to over 3 years. In this case, comparing the moment of hearing a good and final diagnosis to the acquittal of an unjustly sentenced to life imprisonment will not be a metaphor but the truth. The statement that the little boy suffers from mild external hydrocephalus in a result of post-birth complications proved to be a godsend. The doctor willing to look deeply decided to re-analyse the results of the USG done much earlier during pregnancy, which already showed a deviation from the average head size at this stage of fetal development.

This story proves that, as in every fairy tale, there are good and bad powers in every field and specialization. Witch and fairy - both have magic power, but each of them uses it for a different purpose. The doctor who does not want to search and the one following the motto “little by little does the trick” when saving human health and life - they both apply the same theory, but only one of them decides to serve the good power. It is sad, however, that in many cases waiting for arrival of a good medical fairy lasts too long.

- Things we went through inspired me to write the book" Miracles of Faith "for families who are going through or will go through similar struggles," says Lorina, and although the ocean separates us in dialogue, you can feel the community in determination to publicise the need for changes in the society, to promote courage to think outside the box.

- I understand that for doctors, the diagnosis of rare diseases with atypical symptoms may not be simple or obvious, but such an argument is not enough to separate families without seeing an answer at first glance." – explains the social activist.

Lorina Troy's book, which aims not only to bring support for parents of misdiagnosed children but also for the lawmakers to motivate them to modify the law, can be found not only in online bookstores, but also in the White House, the office of Texas Governor Greg Abbott, and the office of Senator Ted Cruz. A representative of the state of Texas issued a statement that the rejection of the first draft amendments to the Act was the result of insufficient knowledge about the scale of the problem and the tragedy experienced by families accused of violence as a result of insufficient medical research. When I ask Lorina if her story has attracted people not only from the US but also from other countries, she enthusiastically responds:

-I receive signals from around the world about the similar drama of many families, and that my book and my story help them to keep hope and strength in similar troubles. In addition to US citizens, I was also contacted by families from the United Kingdom, Germany, Australia and India. After publicizing our case, NBC News launched a series of investigations titled "Do no Harm", in large numbers of them after in-depth diagnoses and media intervention, innocently accused parents can legally hold hand of their children and see them at home.” She also adds:

-I am glad that some of the Polish parents struggling for a child's diagnosis can read my story. The localisation of the problem is not as important as joining forces to fight together against it. I send a tremendous amount of strength and persistence in seeking a diagnosis for parents all over the world, even as all circumstances seem to be against you. If you have doubts, don’t have, trust me, because as a woman who won the answer, despite the fact that national law and medicine stood against her for a long period of time - you can believe me that it was still worth looking for." I strongly believe that Lorina's words can be inspiration and gift for many mothers struggling with unexplained disease of their beloved kids. That is why I felt deep in my heart that this story is perfect to be published on the Mother's Day.

For those willing to read the whole story of the fight for diagnosis and survival of the family, you can find the book on https://www.westbowpress.com/en/bookstore/bookdetails/781373-Miracles-of-Faith