Anthony "Bubba" Hruska was born on a rainy Wednesday, October 6, 2004. We enjoyed our baby boy, who seemed to be growing and developing absolutely perfectly, until we neared the end of his first year.
At the end of April, Baby Anthony developed a fever and bad cold. I just couldn’t shake the feeling that something wasn’t right; he just wasn’t acting himself. We took him to the pediatrician, Dr. Jakos, twice for these early symptoms. The doctor diagnosed him with a virus that “would go away soon”.
About a week later, we started to notice that he was banging his head in pain (I knew he had a headache), his left eye wasn’t blinking, and the left side of his face wasn’t moving normally. It quickly became totally paralyzed from the chin up to his hairline and he began spitting up frequently. He’d never spat up, even as a small baby, so we promptly returned again to Dr. Jakos, who diagnosed him with Bells Palsy, which he might have contracted from having a virus.
Dr. Jakos called a pediatric neurologist who told Dr. Jakos to prescribe an antiviral medication, an antibiotic, a steroid, and eye drops for the "Bells Palsy." He said we could expect to see an improvement in 3-5 weeks. Dr. Jakos referred us to an ear, nose, throat specialist, Dr. Kay, for swallowing and hearing treatment—and an eye doctor, Dr. Friedman, because he stopped blinking.
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When we got home from the appointment with Dr. Jakos, we called our brother-in-law, John, an adult neurologist in New Jersey, and explained the diagnosis. He said he’d do a little research and get back to us. John called back and said he was a little concerned because he’d never seen or heard of a small baby with Bells Palsy before, but he wasn’t a child neurologist and he said Bells Palsy was the only thing close to making sense ... but that it was a diagnosis of exclusion. John generously offered to share his findings with any of the doctors we had/would see. To my knowledge, none of Bubba's doctors ever called John once.
As the days went by, I just knew deep down that something was really wrong. We saw the ear, nose, and throat specialist Dr. Kay first. He was very concerned and I still get goose bumps when I remember the expression on his face and the concern in his voice. Dr. Kay agreed with the diagnosis of Bells Palsy, but said Bells Palsy was a generic term to describe any condition where the seventh cranial nerve is affected. He also said that sometimes tumors or other factors could be the cause of the paralysis.
I started crying and Anthony was very upset. Dr. Kay ordered an evoked EMG for facial nerve paralysis to find out how much signal was left in the nerve and to measure the damage to determine if movement in Bubba's face would ever come back. Dr. Kay did a hearing test right away in his office and confirmed Bubba could still hear in his left ear. We called Dr. Jakos, informed him of this EMG test and asked if he could refer us to a pediatric neurologist for a second opinion before we went for the EMG.
Dr. Jakos referred us to pediatric neurologist Dr. Tatiana Dubrovski. We saw Dr. Dubrovski and she observed Bubba briefly, took a history and asked us what other doctors he’d seen. We told Dr. Dubrovski of the EMG Dr. Kay had prescribed and showed her the prescription for the test. Dr. Dubrovski said “No” to the test, she did not feel this was necessary. “This test is too invasive for a baby.” We also shared with her that our brother-in-law mentioned to us that in all the research he’d seen done on Bells Palsy, he could not find a case where an infant had onset from a cold — they were either born with it or contracted it later in childhood. We gave her John’s phone number and urged her to call him. We wanted her to hear what he had to say, but to my knowledge, she never called. Dr. Dubrovski advised us to wait 1 to 5 weeks more and we’d see an improvement. She did not feel that Bubba needed any tests at this time.
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We took Bubba home and tried to get back to normal life. We Googled everything we could on Bells Palsy and worried how his future would be with a paralyzed face. He continued to spit up, bang his head, be sick and just not right. He slept a lot during the day, but was up all night, was fussy and did not have much of an appetite. He wanted to be held all of the time. We went to the pediatrician's office so many more times for the little symptoms that we lost count. I just couldn’t shake the feeling that something was so terribly wrong, but all the doctors I trusted assured me that he would improve. After we couldn’t stand watching the slow deterioration of Bubba any longer, I called Dr. Jakos and asked for a second opinion with another pediatric neurologist. Dr. Jakos referred us to Dr. Edwin Liu.
We saw Dr. Liu. He asked all the same questions and wanted to run tests. An MRI with sedation and contrast, to be done at Palms West Hospital in Loxahatchee, Florida. Dr. Lui gave us the prescription and sent us home to call Palms West to schedule the appointment. When we arrived home, we called immediately. It was the end of May by now, but Palms West did not have an opening until July 7! I pleaded with the lady on the phone for an immediate appointment — he was a small baby, he needed to be seen right away. She sounded annoyed and told me that if I had to cancel the appointment to call within 48 hours or I would be charged a $50 fee and she sent me a reminder of their cancellation policy. I still have it.
I immediately called Dr. Liu’s office and asked why it would take so long at Palms West and the receptionist at Dr. Liu’s office told me “that’s just how it is, they’re real busy.” I asked her if we could do the test at another facility she told me “No,” that Palms West was the only hospital where Dr. Liu had privileges to write for the sedation, and that we would have to wait. I called the hospital scheduler twice a week to find out if they had any cancellations or if they could put me on a list if they did. The answer was always a flat “No”.
I agonized for every moment of those long, exhausting days, worrying and knowing in the deepest part of my heart that something was very, very wrong, and I did nothing. I wanted to stand on theses doctors’ desks and grab them by the shirt collars and yell “SOMETHING IS WRONG WITH MY BABY!!!! DO SOMETHING!!!!!! TELL ME EXACTLY WHAT IT IS SO WE CAN FIX IT!!!!!! STOP TELLING ME TO WAIT FOR IT TO GET BETTER BECAUSE IT IS GETTING WORSE!!!!" I failed to do that and I should have … I trusted what they said more than I trusted what I knew in my gut to be the truth … I failed … I should have done more ... I should have found another doctor or hospital or some other place that could have done tests right away … I should have insisted until the office staff could see me coming a mile away and would say “there is that crazy mother again; give her what she wants just to shut her up” … but I didn’t … I believed that they were the experts and I trusted them … I did nothing about my intuition but let it eat me up inside.
I tried to convince myself that I was just being melodramatic ... the doctors know what they are doing, I rationalized. I listened to them all … I failed my son and my family … I failed my son … I prayed the most desperate and absurd prayer until he died that God would let me go back and do what I should have done and I would sacrifice everything, just please have mercy and let me go back, give me one more chance. How absurd!! But I really did.
Now I pray a more realistic prayer: “God give me strength to keep going every day for my family and my Bubba and to tell Bubba’s story so it can help others.” That is all I have left.
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We called Dr. Dubrovski back and left a message with her secretary that his face was not better. To this day, I don’t remember if she ever called us back. But whether she called us, or I called her back, I told her we were going to have the MRI prescribed by Dr. Liu, to whom we went to for a second opinion. Dr. Dubrovski agreed that was the next step. Upon hearing the agreement from Dr. Dubrovski, we waited. Looking back on it now, we watched Bubba deteriorate and lose his balance. He was not walking yet and we didn’t realize it was his balance until it was too late. He also lost his ability to sit up, but I thought it was that he wanted to lie down because he was always so tired, sick and uncomfortable. Looking back on it now, his deterioration was gradual and we didn’t realize what was happening … we kept believing doctors and waiting for him to get better.
July 4th was a Monday. The previous Friday, we went to Dr. Jakos because I was certain Bubba had an ear infection and a headache. We were seen by a new doctor we’d never seen before. This new doctor looked in his ears and said she couldn’t see the left eardrum and that “there was probably too much wax buildup.” She advised us to take Bubba home and put peroxide drops frequently in his ear to loosen the wax so it would come out and if he was still having the same symptoms to bring him back in.
I took him home and immediately began putting the peroxide drops in his left ear. There are no words powerful enough to describe how much pain the peroxide drops clearly caused little Bubba. We continued the drops for 24 hours. The wax never came out. (We learned later at the hospital that Bubba was now deaf in his left ear. There was no eardrum left, it had been invaded by the tumor and his temporal bone destroyed. I had been dropping peroxide directly on the tumor in his head and God knows where else. How horrifying.)
On Sunday, we took him in again to see Dr. Jakos. Thankfully Dr. Jakos was in the office and it was comforting to see his familiar face. Dr. Jakos looked in Bubba’s ears and reported that he could not see it: “the wax must be in the way.” Dr. Jakos could not see his eardrum, but he could see no signs of infection either. The doctor looked at him thoroughly and in hindsight I finally noticed that Bubba’s head was tilting to the right. To this day, I don’t know why I didn’t bring it to Dr. Jakos' attention, since he hadn’t seemed to notice it.
When he asked me how the MRI went, I told him Bubba didn’t have it yet. He said he figured that no news was good news. He thought the MRI had been done already, that everything was all right since he had heard nothing. He was shocked and concerned that nothing had been done. As I sit here and write, I cannot recall the rest of the appointment because Dr. Jakos’s expression, shock and concern put me into a cold sweat. I can only remember my fear and anxiety mounting into panic.
On July 4th, Big Anthony said Bubba looked awful. Bubba was unresponsive, breathing heavily, drooling, and his tongue was hanging out of his mouth. I called both Dr. Jakos’ and Dr.Liu’s offices and waited for a call back. Dr. Jakos’ doctor-on-call phoned back first. I explained the situation and that we were to have and MRI on the coming Thursday. The doctor on call advised me to call Dr. Liu or go to the emergency room. Dr. Liu’s doctor-on-call phoned back second and she sounded rushed and suggested that if we were so concerned we should take him to the emergency room and get a CT scan.
A CT SCAN?? NO DOCTOR EVER SAID THAT TO US BEFORE!! We immediately got in the car and went to Bethesda Memorial Hospital in Boynton Beach, Florida. They saw him immediately. The emergency room doctor, Dr. Adler, was so nice. She was pregnant. After asking some questions, she said they were going to do a CT scan. I told her that she would come back with bad news, I just knew it.
Dr. Adler entered the room when the cat scan was over. She looked at me and nodded. The CT scan detected something wrong in Bubba’s brain. The hospital had already called transport, which was on the way to take Bubba to Joe DiMaggio Children’s Hospital in Hollywood, Florida. Big Anthony and I were both crying by now. Bubba's older sister, Olivia, started saying "Daddies don't cry Mommy. Mommy why are you crying? Don't cry." Dr. Adler said they would do more tests at Children’s and they would have to remove “it” from Bubba’s brain right away. We were transported to Children’s, where we lived for the next month.
We went there with so much hope. Hope that we would soon be taking Bubba home so he could grow up healthy and strong. We never imagined anything but Bubba’s survival, because finally we knew what was wrong, so we could do something about it. Then it all started — the poking, the restraining, the needles, the machines, the tubes, the testing, the operations, the crying. We witnessed our baby endure unthinkable, seemingly futile pain, and for lack of a better word, torture. For one solid month.
And then the nightmare that parents quickly chase out of their minds started happening to our beautiful little boy. He was so brave, he never stopped fighting. But he was losing. We brought him home on a Monday night. He would be at home with us in peace and never have to endure chemotherapy or another invasive procedure again. He died on our bed that following Sunday. God Bless our little boy.
Bubba's Video Tribute
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