The Jorge Posada Foundation came in contact with the Carrero Family from Rincón, Puerto Rico on April 21st 0f 2009. We received a call from our star mentor from Puerto Rico, Peggy Chevalier where she communicated to us that she was in the hospital as her son O’Neill who suffers from Hydrocephaly was rushed to the OR because the valve that drains liquid from his head was obstructed and the doctors has to surgically intervene. She did not call us to let us know the difficulties that she was going through; she called to tell us about Justin Carrero. Justin is 19 months old baby that was born with a very severe case of Craniosynostosis and Hydrocephaly.
Peggy told us that he had been hospitalized for over two months and he had been operated on over seven times. Apparently Justin was accumulating cerebral spinal liquid in his forehead and the doctors could not figure out a way to correct this problem. She went on to explain that the family was in dire need of help as they were very poor and when the nurses in the OR had asked Jazmin (the mom) for diapers for Justin prior to going in to surgery she told them that she had no money to buy diapers. Immediately, we knew that we had to assist this family.
Natalia Ferrer, the Executive Director of the Foundation in Puerto Rico, went to the hospital the following day to visit Justin and Jazmin and to find out more details regarding the situation. We determined that the family had some immediate needs that needed to be fulfilled. Justin needed diapers, baby food, formula, chubs amongst others things. The Jorge Posada Foundation reached out to one of our corporate partners for assistance as the laws that govern the foundation do not allow us to give money directly to the families that we serve. Grande Supermarkets, our corporate partner, was touched with Justin’s story and decided that they wanted to assist. They put together a huge basket filled with all the things that the family needed and in addition they gave the family a gift certificate that they could use at any of the supermarkets in Puerto Rico to buy food for the family for the next few months.
Now that the immediate needs were fulfilled, we had to move forward with assisting the family with the medical situation. The doctors in Puerto Rico had decided to insert a valve from Justin’s head to his stomach to drain the fluid that he was accumulating in his forehead. This procedure was performed and a few days afterward the fluid started accumulating again. The doctors then decided to move the valve to the outside of his body connecting it from the head. This procedure did not work either and it was then decided that the valve would be inserted in his spine and connected to his stomach. Unfortunately that did not work either.
The family was terrified at this point as every time that the doctors came to speak to them the conversation ended in the decision that Justin had to be operated on once again. This poor child had to undergo surgery ten times within a three-month period with no hope of finally correcting the situation. We decided that we had to reach out to another team of doctors as the team that was currently working with them did not have the situation under control and could not really tell them family what was going on. We reached out to Dr. David Staffenberg and Dr. James Goodrich from our partner medical center, Montefiore Children’s Hospital in the Bronx, NY. We arranged for the family to travel to NYC once Justin was in a stable condition. This process took a few weeks but we made sure to provide the emotional support that this family needed to get through this process of waiting and not knowing what was going to happen.
In the meantime, we found out that dad Edwin had lost his job as he was in and out of the hospital too much. Jazmin was strong through this whole process but she was very sad that she had barely seen her eight-year-old daughter for the past three months. The family lives in Rincon, which is a two-hour car ride from the hospital that Justin was in. The situation that this family was going through is so difficult to even put in to words; their faces showed the fear and sadness that they were feeling since Justin had been born.
Finally, the travel date arrived and the family was very excited. This was going to be the first time that they traveled on a plane and the first time that they visited any other part of the world. They only speak Spanish so we made sure that our airline partner, Continental Airlines, had someone who spoke the language assisting them in the airport. Once they got to Newark we had a Spanish-speaking driver waiting for them. They were taken to Montefiore Hospital were they would finally meet Dr. Staffenberg and Dr. Goodrich.
We met the family at Montefiore as we wanted to show our support and find out what the next steps relating to treatment would be. In the initial visit it was determined that they had to run some genetic tests to find out a little bit more about the medical condition. New CT scans were needed as well. The doctors told the family that Justin was missing an entire piece of bone in his forehead and that the dura (the lining that covers the brain) had a tear and that is why the liquid was accumulating in the baby’s forehead. Finally, this family had a clear understanding of what was wrong with their child. However, the journey was not nearly over.
The doctor’s explained that they would need to wait at least one year to one year and a half to perform the surgery to correct the condition. Justin’s cranium needs to develop further in order for the surgeons to shave off part of it and use it to reconstruct the missing part of his forehead. This was very difficult for the family to accept but the doctors explained that this would be a long-term solution to the problem and that immediately they would not perform surgery to correct this particular problem as Justin had been operated without success too many times in the past three months. They were explained that Justin had other problems related to the condition as well. He was born without a palate, which limits him to only drinking milk and baby food at this point. He is not able to chew hard food with this condition and the doctors are determining if that is one of the things that they will be able to fix at right away.
Currently, Justin is still in New York and undergoing the final testing that the Doctors need in order to decide what the next steps in treatment should be. The Jorge Posada Foundation has arranged for them to stay at the Montefiore apartments until all the necessary testing and treatment is performed. Laura Posada, Founder and President of the Foundation has personally bought an array of gifts including a stroller, a play yard, and clothes amongst other things for the family so they are comfortable during their stay. Both Laura and Natalia are in constant contact with the doctors and the family to make sure that Justin is taken care of. This boy deserves happiness and the Jorge Posada team will not rest until we know that Justin has received the necessary treatment to lead a happy and healthy life.
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