Hello, I'm Dinis, I was born with congenital transposition of the great vessels, global cognitive delay and I have autism, I eat by gastrotomy and only evacuate with the help of a tube, then remove the feces with a 50 ml syringe.
My name is Dinis, I was born on November 2, 2016. Everything was normal for what my breast says, pregnancy without problems and delivery very well, a beautiful delivery. It was only discovered that something was not well after hours, I started to get dark, I didn't cry, I didn't react to the stimulus or I knew how to feed myself. I was transferred to neonatology, I was intubated to be able to be fed and I took oxygen and stayed in an incubator waiting to be evaluated by a pediatrician. The next day the diagnosis arrived, we could expect anything but to tell dads that I was born with the heart's ventricles upside down (congenital transposition of the great vessels) and with a shortening of the aortic canal. The world fell my popes no one expected such news.
We asked the cardiologist doctor everything if this diagnosis would interfere with my life and my development, to which I said no, but the truth and that there were many setbacks along the way, at 4 months I didn't smile I didn't react I didn't hold my head strength in the limbs. I choked easily with milk, I didn't know how to swallow the soup like all babies. We were then evaluated by a pediatric Nero who gave the diagnosis of an allegedly small developmental delay. Time went by and at one year I did not eat solid food, I did not crawl, I did not walk, I started walking without support at the age of three and a half on a smooth floor. I still do not go up or down stairs without support. I do not have enough balance. My weight was low because I only fed on milk, it was discussed at a medical meeting that I would have to have surgery to put a food probe directly to my stomach, where I would eat everything there and make me gain weight.
However, time passed and I did not walk, I was already doing physical therapy, occupational therapy and speech therapy, but the results were minimal and the problems continued to appear.
I was diagnosed with mild Autism at the time, did not verbalize, made repetitive movements, was selective among other things. The breast never gave up, and I also didn't face everything with a smile on my face as I do today.
Right now my heart is in a very big effort and I can no longer evacuate alone without the help of very expensive medications. I need 50ML syringes and rectal probes to aid evacuation. I also use diapers, I still don't have any type of physiological control for my needs (urinating and evacuating)
My current diagnosis is congenital transposition of the great vessels, autism, delayed brain development, severe chronic constipation (polymalformative syndrome) my syndrome encompasses several organs of the body and remains in a state of investigation in the European Union laboratory waiting for the disease to be discovered and to give this pathology a concrete name, a syndrome with no name yet.
At this moment we received the news that I will be operated on, it will be the second surgery on the heart this time, it will be to start the preparation for later changing the ventricles and putting them in the correct position is a partial surgery will be done in two, because the risks will be much higher. We know that we will have increased costs after the surgery between material, medication and physiotherapy to recover the time that I will be stopped after the surgery. We will also be dividing the wall of our room so that Dinis can have his room and put all his necessary material. Unfortunately we cannot have them both sleeping in the same room, they are both children and Dinis's brother does not understand the dangers of playing (jumping off him) ends up for example by taking his breath away and also damaging the peg wherever he goes. feed located in the belly. All these extra expenses that we did not expect for now are necessary, we need to adapt the house to the next needs of Dinis so that the pro-operative is a success.