IN THE PATIENT"S SHOES

Patient experience – by Isabela Castro

The Patient Perspective

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We must acknowledge that while healthcare quality as a concept is universal, the road that leads to quality must be dependent on the context. - Dr Carsten Engel

Ms. Isabela Castro

 

MY STORY: I am a dentist. I live in Rio de Janeiro, Brazil. And today I’m going to share with you a very special story I have about the most important patient I’ve met in my career. The one important for me changed my life completely and made me think about the system of healthcare, the disparities of this system, and how we, providers and patients, are responsible to fix the system and changing and leading the change. And patient experience.

 

What’s beyond the books? How can you start telling people’s hearts and tell them some lessons?

 

I’m going to tell you today Mateo’s story. Mateo was a patient that I saw that I assisted and the Brazilian Air Force in my first years as a dentist. I’m going to share with you the Meckel Gruber syndrome a little bit – some clinical aspects, subjective aspects, the oral complications. The syndrome brings the journey of materials in the hospital and what mattered to him and his family. Well, the Meckel-Gruber syndrome is a rare autosomal recessive condition mapped to six different loci in different chromosomes.

 

This mapping suggests genetic drainage ETSI imago Gruber syndrome, and more than 2000 cases have been reported in the literature. The triad of occipital and cephalic cells, large polycystic kidneys and post-axial polydactyly characterized the syndrome.

 

He was born in the city of Brasilia in a hospital affiliated with the Air Force, and he had this huge and full cell. And his family already knew that he has the syndrome because he has been diagnosed with an ultrasound. And you know what happened to him after his birth? After delivery, he was left in bed waiting for death because as I said, it’s a very rare disease and also little could be done. His father, who was a very brave man, did not accept this.

 

And knocked on every single military leader’s door to ask that they did something for his kid. They were able to get a transfer to Rio de Janeiro, to have the surgical correction. So Mattis came to Rio de Janeiro to correct this. After the procedure, he had a tracheostomy and gastrostomy tube and one of the components of the syndrome was – a lot of seizures every single day.

 

And his mother had made a complaint, a formal complaint in the leadership room. I was told to go to see Matteo because I was in my first days in the Air Force. So I was like a freshman. It was like a punishment for me to go there and see him.

 

So, the case was at this time he was 22 months old. Male local drama admitted to the intensive care unit at the Air Force Central Hospital, presented with parted lips, extensive crusts and significant ulcer and a left lingual arch with about two centimetres of diameter covered with the soda membrane, which was swollen hard on palpation over six months of following. Irregular margins according to the. He had a medical diagnosis, of the syndrome with frequent episodes of convulsions. The presumptive diagnosis I provide was a traumatic ulcer.

 

At this stage of a baby’s life, the teeth are under eruption. He received daily dangerous monitoring, showing a significant improvement in the oral clinical

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