Sebastian is an amazing kid; he was born in May 2005, When Sebastian was born, we thought God sent him into our lives to give us something to fight for, to show us there is so much love in this world. He is our gift from God, he without a doubt is also our hero. He is very sweet and is an extremely bright child who has been able to identify all the US Presidents since he was 4. Sebastian takes care of others and makes sure they are happy. No matter how bad he feels, he always has a positive attitude, “I am OK mami” or “I am OK papi.” One of his music school friends said once, “Sebastian is never sad; he never cries.” He loves to play the drums and loves taking painting classes. Sebastian loves and has so much knowledge about music; he can talk about music and make you feel as excited as he feels about music. He also loves cars his favorite one is the Lincoln Navigator. He always tries everything and does not feel behind or different.
However, every day of his life hasn’t been the happiest. He has spent plenty time in hospitals due to his diagnosis of which was given at birth. A few hours after he was born the doctors discovered he had Congenital Diaphragmatic Hernia, which is a birth defect that develops as a fetus is forming in the mother’s uterus. A congenital diaphragmatic hernia (CDH) occurs when the diaphragm does not form properly. The diaphragm is a thin sheet of muscle that separates the abdomen from the chest. The diaphragm is an important muscle for breathing. When there is an opening in the diaphragm, organs that are normally in the abdomen can be pushed (herniated) through the opening into the chest. Currently little is known about why this birth defect occurs.
Four 4 days after Sebastian was born, Sebastian’s diaphragmatic hernia was repaired. After the surgery, doctors discovered that he did not have a diaphragm and also had his liver grow attached to his right lung; he was one of the worst cases. Despite the seriousness of conditions, the surgery was successful, Sebastian was place on a ventilator or a breathing machine. After very difficult 6-months stay at the hospital , Sebastian was discharged with a mechanical ventilation machine, oxygen, a G-Tube (a tube inserted through the abdomen that delivers nutrition directly to the stomach), a tracheotomy, and 26 different medications. His diagnosis then changed from CDH to pulmonary hypoplasia, lung failure, and pulmonary hypertension. At this point the doctors did not know how he would develop. Most of them told us that Sebastian might not be able to talk, walk, or even learn. Actually, one of the doctors went further to say that he could not do anything else for Sebastian at the hospital; that “sometimes chronically ill children get better at home” Understandably, this statement was devastating to us.
Among the CDH complications are the reduced blood flow to the lungs and pulmonary hypertension (high blood pressure in the pulmonary circulation), as well as asthma, gastrointestinal reflux, feeding disorders and developmental delays.
As Sebastian’s parents, we never stopped believing he could overcome most of his health challenges. Walt Disney once said, “If you can dream it, you can do it.” As a family, our dream is to see Sebastian as healthy as he can be. As parents we would like to see him have a normal life like other children. One of our most exciting moments was when Sebastian graduated from elementary school. As parents we would like to see him up there with other children receiving awards; although under his circumstances, we knew it would not happen. Yet, he gained the respect and admiration of everyone in his school; when Sebastian was called to receive his 5th grade diploma, he received a stand up ovation that lasted for at least one minute, this was for us the best award of all.
Another complication, associated with Sebastian condition was a severe case of scoliosis. He had surgery for the growing rods in January 2017. Before the surgery he needed at least a ¼ liter of oxygen, then ½ and he started complaining about been tired and lack of oxygen. We realized that his health was deteriorating and his pulmonologist decided to send him to Gainesville Florida for a full evaluation at Shands Children Hospital. After his very hard 12 years fighting for his health with ups and downs, the doctors finally gave us the only option we have: Sebastian needs a lung transplant as soon as possible.
If you want to help us during this crucial and hard time with our lovely son, we invite you to donate the amount you consider to the Children’s Organ Transplant Association (COTA) in honor for Sebastian M.