Meet Ezekiel Vaughn Hernaez, son of Vanni and Ariel Hernaez. Zeke was electively born last friday, July 28, 2024 due to small gestational age predisposed by a condition called placenta lake. Little did his parents know that more devastating and unexpected things will unfold. He is diagnosed with Grey Matter Heterotopia (GMH) it is a neural defect due to an anomalous development of the cerebral cortex and also has an incidental finding of multiple congenital heart defects. This situation has put their family in financial and emotional turmoil. I am a close friend of their family and would like to help gather funds to save Zeke and aid their family’s recovery. Here is the detailed story by his parents, if you want to know what happened to Zeke. July 28, 2024, Friday 1148H Our little guy here, Vaughn Ezekiel Hernaez “Zeke” gave us a shock of a lifetime. He was like, HERE I AM FAMILY! And ever since that, we have cried nonstop. A bittersweet experience of and for a LIFETIME! Our son's Apgar score was low, he was loopy, did not cry and his color was different during delivery or when he was taken out. The plan was for me to cut his umbilical cord but since it was an emergency, it was halted and the OB had to do it herself. A team was called from NICU to the OR. Imagine you being in the healthcare and you know something was happening, but you have to stay calm since on the other end you are holding your wife’s hand, Vanni Martin Hernaez. His breathing was different, so I was told he will be taken to NICU and was placed on a CPAP to assist with his breathing. Afternoon came and I was given updates on him. They’ve said a few words and I already started to cry. I know exactly what I am seeing as a father and somebody who works at critical care. His vitals were probably stable but guarded, he is on CPAP machine, his movements and reflexes were poor or none with a Neuro score of moderate to severe. On top of that, they were preparing to insert a central line. I couldn’t find the words to come to my mouth. The NICU team discussed the plan, initial findings and interventions done on him. How can you tell the news to your wife who is still in pain, and sedated from post-surgery? You almost have no words but cry. Later on, when we visited him at 1800H. Findings were: he has a possible cyst on his head with decrease in blood flow in some parts of his brain, he has Tracheomalacia on top of those, and 2 Valves on his heart have not closed. Being the head of the family, being emotional was probably and understatement that I have felt during that time. Oh, and BTW, he will be COOLED or will on Targeted Temperature Management for the next 3 days to allow his brain to rest and hopefully reverse for a possible insult that might have happened. I have no words, can’t do much also, we just hope and PRAY to our God Jehovah. After the 3rd day, they rewarmed him. And working in critical care would tell you a lot during this phase. I was so restless that night but at the same time trying to calm down and rest. Being the head of the family, if something were to happen on me, then it would be a domino effect. Zeke now is off sedations. He slowly improved, was waking up and his reflexes were slowly coming back. Nurses would know what that means. Mind you, there was no rounds from the OB Team after surgery. Somebody went briefly the next day, but Sunday there was none at all! How would you feel saying BYE to the resident who was one helped did the surgery, but right before the day ends there was nobody to explain to you what had happened. Feeling terrible was an understatement. It was Monday already when somebody came saying blah blah blah, your stitches look okay, when do you plan on going for discharge? Do you have any questions? YES, I DO! I am glad I woke up and they could have just gone their way again. I asked for the FHT trend if there was some distress prior to the delivery. Honestly, I don’t want to go with the whole ordeal again, but something has to be improved. I have to formulate questions on what had happened. I went back and recollected the events. How can my boy Zeke pass the Genetic screen, Ultrasound every week, passed the biophysical profile 8/8 have any issues now? I have a lot of question not addressed. Something must have happened. From all of these, I would say that right from the start my boy was taken to NICU up until now, the TEAM: doctors, NP’s, nurses, social workers, and the unit secretaries were all amazing. I could not thank them enough. Going back to the OB unit, NURSES there were fantastic also. It was Thursday when they did the 2nd MRI and learned his diagnosis, and finally after 2 family sessions. Pedia Neuro discussed to us the result together with the NICU team. Sad to say, he has a rare condition that affects or will affect his neuro, cognitive and physical status that would predispose him to have seizures later on when his brain starts to develop. If you were in our shoes, how would you guys feel? I thought that from where I came from, nothing would shock me. I guess I was mistaken. To all our friends and families who have sent their well wishes and regards and asking about our son’s condition, we apologize for not replying. Regardless of everything that happened. We are still so excited to have our boy come home. We can’t wait to hold him as a family of 5 this time. He has and will have all the love and care that he needs. It will be a challenging road for him and us ahead but we are still very grateful to have him. He changed us and he made us closer together. Again, we are so blessed to have him. To all our family and friends who have helped us during this challenging time, We APPRECIATE YOU and we can’t Thank You enough. God bless you and your family!
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