Artwork by Alisha
Our son, Jesse Singh Gill, came into this world on October 12th, 2018 at 12:47pm weighing 8.9 pounds and 22 inches tall. He was a very healthy baby meeting all his milestones. Jesse had beta thalassemia minor just like his Dad and older sister Alisha. Beta Thalassemia minor is a genetic blood disorder characterized by less oxygen-carrying protein (hemoglobin) and fewer red blood cells in the body than normal. Since the minor form runs on my husband’s side of the family, this had no affect on Jesse and he was just borderline anemic. In the month of January 2020 came our first nightmare. Early January, Jesse became sick with croup and a double ear infection. He received a steroid shot at his pediatric office and antibiotics for the ear infection. He started recovering within a couple days. A couple of days later, his sister Alisha started coming down with a cold. Jesse became sick again and we assumed he picked up something from his sister Alisha again. They both tested negative for the flu virus. We were told it was the common cold and they would be better in a couple days. Alisha got better, but Jesse kept getting worse. He was starting to breathe heavily. I took him to urgent care and he was diagnosed with Pneumonia. He was given a breathing treatment and sent home with an inhaler, steroids, and antibiotics again. Through the day his breathing became more labored. We took him to the local ER and he tested positive for RSV. He was rushed to the nearest children’s hospital so he could be admitted into a PICU and put on a noninvasive ventilator. He had a 7 day long stay in the PICU there to help with his breathing while his lungs recovered from RSV. They said he was one of the unfortunate kids that had a more serious version of RSV. After a couple days home, Jesse had completely recovered from RSV and started to act like himself again. But the difference now was that he had a phobia of any doctor’s offices due to his PICU stay.
On March 1st, 2020 we all woke up on Sunday morning in normal routine. In the evening, Jesse started to feel a bit warm. We checked his temperature and he was at 99.0F. Worried once again, we told ourselves it must be teething. The following morning, the fever jumped to 100F. Stressing out that could it be the RSV again, we began to monitor him closely. We were still traumatized from what happened in January. The night of March 2nd, I took him to the ER. Once again, he got checked for RSV and the flu. This time, he tested positive for the flu virus. I asked, “How could this be?”, he had his flu shot for that year. I was told that not all strains of the flu are covered in the shot. We were sent home with Tamiflu, Ibuprofen and Tylenol. The next day on March 3rd, Jesse was not doing any better and stopped his intake of any liquids. His fevers were also hitting 103F to 105F. He didn’t have any wet diapers in over 6 hours, so we took him to the ER again thinking he needs some IV fluids. This time, we were admitted. We were also told that overnight he would get some IV fluids and we would be discharged in the morning. Morning came and his fevers were still not controlled with Tylenol and Ibuprofen every 3 hours. His breathing started to become labored again by the evening. Chest x-ray showed that his lungs were once again filled with mucus. We were still in a regular pediatric room with some low oxygen. By the night, we were moved to the PICU again for the noninvasive ventilator. Again, they said that he needs help breathing while his body recovers. We questioned that why are we going through this again. Is there something wrong that he is developing such severe reactions to a virus? They said he was unfortunate that he got hit with a virus again and the game plan would be the same just like his last hospital stay in January. On March 5th, we just sat with him in his PICU room and comforted him in our laps just like last time. Towards the evening his face and eyes started to swell. We were told its a common with the flu and the oxygen he was getting. Around 11pm that night, I laid down with him in the hospital reclining chair to sleep. He was very fussy with his positioning that night. He only wanted to lay his head flat down. He usually loved falling asleep on my chest, but not this night. Around 4:30am in the morning, he woke me up and asked for some water. He took a couple of sips of water and I decided to change his diaper. He was drowsy during his diaper change and I figured he was just sleepy. We went back to sleep in the recliner chair.
An hour later, I heard some gurgling in his throat. I immediately got up and lifted his head up so he could get out whatever was in his throat. He immediately threw up blood and started fainting. His eyes were rolling back and body becoming limp. I yelled for the PICU nurses and we got him on his hospital bed and he threw up blood once again and lost all consciousness. From that moment on, the rest was a blur. From code being called on him, to being intubated, and PICC and arterial lines inserted. They couldn’t understand what was going on with him. Every single organ in his body was suddenly failing him. He was being poked so many times and not a single flinch on his face or reflex from his body. He was immediately taken for a CT scan to rule out anything going on his brain. That’s when the PICU Doctor said something is very strange. He had an area around his brain stem showing bilateral swelling. Calls were made for him to be airlifted to the nearest specialized children’s center. He was very unstable. He needed a blood transfusion, his platelets kept dropping, and everything was all over the place. The specialized team from the other hospital arrived via helicopter. We were told he was too unstable to take on the helicopter and until his numbers looked a little better, they would not be able to take him. After a couple hours, they were able to airlift him to the other hospital. We were praying he would make it through the 20 minute helicopter ride while we followed in our car. We arrived at Loma Linda Children’s Hospital around the same time they landed in the helicopter. A PICU room was all ready for him before we got there. He was immediately hooked him up to EEG leads and taken for an MRI.
Immediately after, doctors started saying things like acute necrotizing encephalopathy. ANE is a rare brain disease that occurs following a viral infection such as the flu. It causes brain damage and swelling in the brain which eventually leads to tissue death.These were words we were not understanding. How did something like the flu affect his brain? They started telling us that his chances to survive were very slim but they would do everything they could. ANE was something very new to them as well and they tried to tell us how rare this was. That made us even more uncomfortable. Doctors are suppose to know treatments for everything and now here they are telling us there is no exact treatment plan for this. His team of Doctors read case studies on other patients that went through the same and possible treatments that may have worked. Since every organ in his body was failing, he was hooked up to so many medications that they didn’t have enough room to administer them at one time. His brain stem had become so affected, that his body could not regulate his temperature and he needed a warming blanket at all times to regulate it. The entire PICU team from the other hospital was blown away with this diagnosis as well. No one saw this coming. All of his symptoms were masked by “regular” flu symptoms. All we were told by every doctor from then on was to pray and hope for a miracle. From March 6th to March 10th, they did everything they possibly could. He was on a continuous dialysis machine for his failing kidneys, an EVD drain to relieve of any pressure or fluid in his brain, and so many lines that we could hardly recognize our own child. Day and night we sat next to his bed hoping there would be any sign of improvement, but nothing. On the morning of March 7th he lost his cough and gag reflex. That was the only sign showing that his brain was still working. On March 10th they did a repeat MRI and that only showed more damage than the previous MRI in his brain. We were told that it was time for a brain death test. For any parent to watch their child go through that on top of everything else happening, was a whole different nightmare. March 11th and March 12th, two brain death tests were done and unfortunately, Jesse was declared brain dead on March 12th, 2020 at 2:30pm. Our entire world crashed. What would we tell our daughter Alisha about why Jesse didn’t come home with us? How were we suppose to continue to live without our little boy? We will never understand why this happened to Jesse and our family, but we are blessed for all the memories he gave us in his 17 months of life.
We will forever live our lives with those memories and the hole in our hearts always aching for him. The RANPB2 Genetic Testing was done on Jesse. This is the only gene that has been linked with ANE so far. However, it may not be the only one since many still test negative for this gene mutation. We received results 6 weeks later saying he tested negative. Those results also said that there may be other genes associated with ANE.