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It all began during Israel’s spring break. We decided to take a family trip to Orlando to celebrate Israel’s birthday at Universal Studios. Little did we know that this trip would take an unexpected turn. On Sunday morning, Israel started feeling unwell, but being the brave child he is, he didn’t complain much. As the day progressed, his discomfort and fatigue grew, so we decided to return to the hotel, where Israel fell asleep. That night, he woke up with intense headaches, followed by vomiting and fever. His health deteriorated rapidly, and the symptoms persisted and intensified despite the medication. The next morning, Israel couldn’t even get out of bed to go to the bathroom and would faint while we talked to him. We continued giving Israel medicine, but the fever persisted, and he remained unconscious while vomiting throughout the day.
We rushed to the emergency department at Nemours Children’s Hospital in Orlando, where the medical team quickly assessed his condition. I tried talking to Israel to see if he could hear me, and all he managed to say was that he was in pain. They suspected meningitis caused by pneumococcus. The emergency department doctor explained the next steps, conducted various tests, and managed to lower his fever. Later, the doctor explained that they would take him to the PICU for further examinations. There, Dr. Kahana understood the severity of the situation and later arrived with the results, confirming that Israel had bacterial meningitis caused by pneumococcus. They started treatment immediately. Israel underwent various tests, including a CT scan, which revealed something nobody expected: an encephalocele, an appendix-like extension coming from the brain without function. In Israel’s case, this mass went from his brain into his nose and needed to be removed with surgery.
Looking back, Israel has had respiratory problems since birth. He had frequent congestion, snoring, and seemed to have colds all the time, which other doctors attributed to allergies, adenoid hypertrophy, or asthma. Now, thanks to the doctors at Nemours Children’s, we know he didn’t have any of those issues; it was the encephalocele all along.
Solving the problem would not be an easy task, and it would require a long surgery lasting several hours and involving a neurosurgeon, an otolaryngologist, and a plastic surgeon all working together.
Israel’s surgery took place on April 28, and it was a moment of anxiety and fear for us as parents, as we never imagined our child would go through something like this: brain surgery requiring three specialists. The doctors took the time to assure me it was the best option, and they were right. The encephalocele needed to be operated on because it had grown so much and was near the opening of the nose, posing a constant risk of contracting other viruses or bacteria that could affect his brain again. The doctor explained that they had to open his scalp, go down to the bone, lift the skull bone off the brain, and see where the issue was. They found a hole in the bone between the skull and the nose and saw where the tissue could fall into the nose. Neurosurgeon Dr. Chris Gegg was able to lift the brain off the skull bone, while Craniofacial and Plastic Surgeon Dr. Leto Barone lifted a flap of tissue from the skull and put it in place to block the hole. Otolaryngologist Dr. Santino Cervantes then worked from the inside of the nose to remove the part of the mass in the nose. Surgery lasted 7 hours but went very well.
Israel had to wear a large helmet on his head for protection and to prevent bleeding. They inserted two drainage tubes behind his ears to avoid clotting and excessive swelling. The surgery was successful, and Israel’s recovery was remarkable. In a matter of weeks, he was breathing normally again and leading a better life.
The medical staff provided exceptional care and support throughout Israel’s stay at Nemours. He was treated for intense headaches, back pain, and neck stiffness. They helped him cope with the anxiety caused by the whole experience. I cannot express enough gratitude for their dedication and professionalism.
It was a challenging time for our family, especially having to separate from my two youngest children, who had to return to Miami with their father and my sister, who was visiting from Peru. However, the Ronald McDonald House provided a wonderful solution, allowing us to be together during this challenging period.
Israel continues to have appointments at Nemours to ensure that everything is going well. He continues to see his surgeons to make sure everything goes as expected.
From the moment my son entered the hospital, we felt well cared for! In fact, when he arrived, many doctors and nurses came and attended to him immediately. I had a thousand concerns, and the nurses went above and beyond in their attentiveness and kindness, both with my son and my family. The doctors were very attentive to Israel’s case and helped us in any way they could to accelerate this whole process. I truly have no words to express my gratitude for everyone who attended to my son and our family at Nemours.
Israel’s determination and bravery throughout this journey has been impressive. He wants other children facing similar challenges not to be afraid, and to know: “They will be okay, and they have to trust the doctors.” He also recommends, ” to go to Nemours so that the doctors there can treat you and help you recover quickly!” Finally, he says, “I want other kids who with the same problem not to be afraid, to see that they will be okay, and that they will recover and be able to live a normal life afterward.”
Our plans for the future are simple: focus on Israel’s well-being and recovery. We look forward to seeing him back on the soccer field soon. And yes, we plan on celebrating his triumph over adversity with a trip to Disney World, just as he wished! My advice to parents would be that no matter how bad the situation is, don’t lose faith. I never thought that my child would go through this. Israel is alive and well now and can breathe normally. The doctors really did the best job possible. Trust the expertise of the medical professionals around you, and don’t hesitate to seek help from organizations like Nemours. Your path may be difficult, but with bravery and support, you can overcome it.
