My Son’s Vaccine Horror Story
By Tammy Carrington, Diboll, Texas
We live in East Texas in a town called Diboll (about 125 miles NE of Houston). My husband works for the Texas Forest Service and has been there for 23-24 years. I owned my own medical transcription business for approximately 13 years until my son became sick and I had to shut it down in order to care for him.
When Fred and I got married we decided that we would wait two years before starting our family. When I found out I was pregnant after two years of marriage we were so excited and began reading everything about pregnancy. I read everything I could lay my hands on regarding healthy eating, nutrition, and giving the baby the best start in life that I possibly could. I gave up all chemicals in foods, aspartame and saccharin, caffeine, etc. so that our baby would be getting only the best source of nutrition. I also read everything I could lay my hands on about each stage of the pregnancy and I exercised every day.
I felt great and my blood work was the best the doctor’s office had seen in a pregnancy in a long time. I then researched methods of delivery and after participating in several classes and reading a bunch of books, I decided that the best would be for me to go through labor and delivery naturally. My husband and I had a private tutor who instructed us on the Bradley Method of childbirth which taught you how to breathe and focus. I didn’t want the epidural drugs in my son’s bloodstream and knew it would probably be uncomfortable for me but it would be best for him. I had absolutely no complications during my pregnancy.
When the day finally arrived that my water spontaneously ruptured at 41 weeks, my first experience with labor began. I went through 19 hours of labor but the last couple of hours were the most intense since they decided to initiate Pitocin. Finally at 8:19 PM on July 31st, 1997 our little son arrived into this world weighing 9 lbs and 7.6 oz. He was 21 inches long and let out a robust cry. There were no complications during labor or delivery. He started to breastfeed within 10 minutes of birth and was 9/9 on the APGAR scale.
As I already stated, I researched and read everything I could lay my hands on while I was pregnant so that I could make informed choices. This is my nature and probably a product of my occupation of being a medical transcriptionist. I had the OB/GYN sign a three page typewritten Birth Plan that I had put together after doing all the research and finding the things that were important to me. The Birth Plan included Labor, Delivery, and Postpartum wishes. I was able to research, read all the opinions and make decisions on what we felt was best for our baby.
The one thing that I was never told about (or uncovered in my extensive research) was the hepatitis B vaccine that my son would be given in the hospital just before coming home. If I had the opportunity to research this vaccine prior to him getting it, he would have never received it. It was amazing to me that as an educated person who did research and a Birth Plan that my intensive search for information never turned up anything on this vaccine being given to newborns. My research nearly 2 years later on this topic revealed that newborns are not even in the risk group. This recombinant Hep B vaccine has no safety studies, no double-blind studies, and no studies were done on babies. My baby was a guinea pig for this vaccine. I looked into the hospital records and it clearly states that I was tested routinely for Hep B during pregnancy and I was Hep B negative.
Jonathan was a normal baby while in the hospital. He was breastfed on demand and they would bring him to me during the day or night when he was hungry. He was a very good little nurser. He cried normally when he was hungry or when he had a dirty diaper. They commented to me that “he certainly didn’t like a dirty diaper”.
He also did not like to have his little arms swaddled up inside the little blanket. He was able to have bowel movements. Friends and family were calling and coming by to visit and saw what a beautiful, normal baby he was. We were able to stay in the hospital for three days. Blue Cross/Blue Shield has a program for the employees of the Texas Forest Service called the Mother and Baby Program. They assign nurses to pregnant women and then that nurse follows the pregnancy through until delivery. I was assigned a wonderful nurse named Melba. She called me at regular intervals and would check in with me after my doctor visits. She called me while I was in labor and again after delivery to check on us. She approved an additional day since my labor lasted 19 hours and she wanted me to be able to get some rest before going home.
The time finally arrived that we would need to leave the hospital and go home. We were pretty nervous about leaving. We were mostly nervous about how to properly change a diaper! The nurse in the nursery took the time to show us what to do. As luck would have it, Jonathan even had a bowel movement and we watched carefully how to hold his little legs and clean him up. He was so cute and so little; we were actually afraid of hurting him and needed to “see” how to hold his little legs while doing the diaper change. This was a first child for both of us. Neither one of us had much experience being around babies.
When the diaper change was complete, it was time to start signing discharge paperwork. Fred was handling all that while I was holding Jonathan. I was so proud of our little boy and we were so very excited about getting leave the hospital and our life was now changed with the addition of this precious little boy. Fred was presented with papers and asked to sign each paper after a brief description of what that paper was needed for. It sounded something like this, “Sign here and take this one to the cashier downstairs and then bring the receipt back up here so we can release mom and baby.” Then the Hep B consent form was presented to us. “Sign here, everyone gets this”. The vaccine had already been given without our consent or knowledge. Fred signed all the papers because we trusted everyone and because we were anxious to get home as a new family. Fred had already loaded all the flowers and gifts into the car and all we needed to do was get into the car after finishing the paperwork.
I was seated into a wheelchair with Jonathan in my arms and a nurse pushed us out to the front of the hospital to help get us into our car. It was during this wheelchair ride that I first saw Jonathan really starting to cry. The nurse gave me a tip that if I put my little finger in his mouth, it would give him something to suck on and keep him quiet for a little bit. She said it was a good helper sometimes. I was pretty nervous being a new mom about what to do, and I wanted to do it right.
We got home and I nursed Jonathan again. Fred and I were looking at how cute we thought our little boy really was and we were so excited. We jokingly mentioned that maybe one of us should sit up and watch him to make sure that he was okay. We did not know what was ahead.
Within approximately four hours of Jonathan receiving the Hep B vaccine he began screaming at the top of his lungs and we couldn’t get him to stop. The nurses at the nursery were all so nice and they told us that if we had any problems to feel free to call them. They said that because they deal with all the newborns they were experts at answering questions and were easy to get in touch with since they are there 24 hours a day that we could call them anytime if we needed to.
They wrote their number on one of the signed forms so that we would have it if we needed it. We called that number because he had started really screaming and we couldn’t console him. We called the hospital nursery and they told us that he was probably just scared since he was not in the environment that he had become accustomed to in the hospital with the sound of incubators humming, lights and smells. We called back later and they told us to just let him scream in his crib for 20 minutes. If he didn’t quit screaming, then we could pick him up. The screaming intensified and I literally began crying myself.
My hormones were all messed up and I could not stand to listen to my baby cry so violently. It hurt me to hear him cry like that and it made me feel nauseated and I wanted to throw up. We made several more phone calls and ended up checking things like temperature (which was normal), checking his diaper (which was dry), nursing him (which only temporarily stopped his screaming), etc.
Jonathan literally never slept and he screamed a high pitched and blood curdling scream most of his waking hours. He only slept for short periods, about 10-15 minutes at a time and never slept for more than 4 hours in an entire 24 hour period. We took him to the pediatrician and we were told that it was colic and he would out grow this. We were told that it could take three to six months to outgrow this and that we would just need to be patient. Since this was our first child, we didn’t know what was normal and what wasn’t. So, we waited.
The only thing that I could do to help with his screaming was to nurse him. He was nursing about every one to two hours. He would be content for at least 15 minutes but usually not more than 30 minutes. This was exhausting for me to keep on this schedule with no sleep. He did not seem to fatigue and his voice did not seem to ever get tired of the high pitched crying. He was gaining weight, maybe a little too much since he was nursing so much, but it was the only thing that I could do to console him.
Jonathan continued the horrific screaming. We couldn’t take him into public because we couldn’t console him when he was screaming and certainly couldn’t stop it once it started. His screaming was so intense that his face would become blood red and he would have a look of “panic” on his face that I could do nothing to help. If I tried to take him to run to the grocery store for a minute, I would nurse him first. Then we would hurry to the store and try to get out as quickly as possible. There were times that we would get to the check out but he would get that look on his face of getting ready to cry, I would break out into a sweat and leave the shopping cart and run home. I was embarrassed because I felt like such a horrible mother not being able to help or console my own baby at all.
He would wake up screaming even if he only slept for 10 minutes, in fact his screaming would start before his eyes opened. I tried all day and all night to console him to no avail. I felt helpless and useless. I could not escape his screaming. I could hear him screaming while I took a quick shower while my husband tried to console him.
Many times I broke down and cried while standing in the shower because I could still hear him screaming. There were many times that I couldn’t cope with the continued crying and had to put him in his baby carrier, place him in his crib (so that he could not fall or hurt himself) and go into the backyard for just a minute to escape the horrific crying. I cried so much myself. I just didn’t understand how people could handle more than one child since I assumed that our situation was normal. We knew that everyone told us that we would not be getting any sleep and we certainly weren’t getting any sleep. But we were first-time parents and we did not have a “norm” to compare to.
We had to hire someone who was good with babies to come and help us so that we could try and get some rest. The person that we paid to help us had run a child daycare for many years and was great with kids and newborns. She knew all the tricks to console babies. Fred and I had been taking turns trying to care for him all day and all night. It was exhausting. That is when Carla came to help us for a week during the night when Jonathan was less than 2 weeks old and again several other times.
I took Jonathan into the doctor’s office because he was not having bowel movements and we were monitoring this very closely. When Jonathan was eight days old he was diagnosed as being constipated. I had never heard of a breastfed baby being constipated, but he was. Breastfed babies usually have loose stools. We went home immediately after the doctor appointment because his screaming had started up again and I got a friend to go the drug store on her way home from work to get me some Babylax glycerin suppositories. He got his sphincter stretched by the doctor thinking that perhaps his muscles were too tight to allow the stool to exit his body. His sphincter was stretched several times and this did not help his constipation. He began losing all his baby hair. He was irritable, unconsolable, suffered from sleeplessness, and the high pitched screaming continued.
Anytime we would try to go anywhere, I would nurse him first to help him to be content for a little bit. When we would get to the doctor’s office we would go directly to the “nursing room” and I would nurse him again. Like I said before, I was very embarrassed that my baby would cry and I felt that for some reason I was not a good enough mother since I could not console my own baby. By the time he would get ready to start screaming again, we would be almost finished and walking out the door to go home. I even made a tape recording around this time of his horrific crying because I didn’t think the doctor understood how terrible this crying was. It was around the clock. The doctor was busy that day and didn’t have time to listen to it and I was a little embarrassed to even have made the tape. We were reassured that it was colic and that he would outgrow it.
Jonathan would cry and cry and then he would jerk his legs upward. We were told that he had gas and that Mylicon drops would work. In my recent research I discovered that this is typical of infantile spasms according to a book on epilepsy written by Johns Hopkins University. As I look back now, I can see all the times that he was actually having seizures but we believed they were gas pains.
He got his second Hep B shot when he was two months old and the screaming intensified. He received three other shots that day including the DTaP (Diphtheria, Tetanus, and aceulluar Pertussis). He continued to be horribly constipated. We had to “dig” the stool out of him and he would bleed and scream terribly. No on should have to go through so much pain trying to have a bowel movement. His little rectum would rip because the stool was so hard and he would push so hard. He had terrible hemorrhoids from pushing so hard.
The doctor told me that the bleeding that would follow the last of the stool was probably from the internal sphincter tearing as the stool exited. The already high-pitched screaming intensified. My recent research led me to check his vaccine lot numbers against the government database VAERS and I discovered that his DTaP vaccine that he received that day was a HOT LOT. A hot lot is a batch of vaccine that killed a bunch of kids and injured a bunch of kids. It is a batch that had an unusually large amount of adverse events reported to VAERS. Jonathan’s DTaP was one of the top ten hottest lots in US history.
When he was approximately 4 months old he woke up after an unusually long sleep and I got him out of bed to breastfeed him at about 9 am. I could not get him to nurse. Every time I tried to nurse him, he started crying and rubbing his little eye with his fist. He had always been a very good nurser and I thought maybe he was teething so I put a little Orajel on his gums. This did not help his crying. I tried to give him a little taste of Tylenol; sometimes a taste would distract his crying for a moment. This did not do anything. I then called the pediatrician’s office to request an appointment for Jonathan.
I called about 9:30 am and said that we needed to come in “THIS morning”. Honestly, I really thought it was an earache because I had heard that most kids seem to get them but I wanted him to be looked at. They told me to be there at 10:40 and the doctor would work him into the schedule and see Jonathan before lunch. While I was getting Jonathan ready to go the pediatrician’s office, he threw up and started having dry heaving. He had not eaten anything since the night before. He then became very pale. Our regular pediatrician was out of town and we were seen by her partner (who had never laid eyes on my child). This doctor actually saw Jonathan by 11:00 and did not like the way he looked. He told us that.
He did some labs in his office which were all negative. He then sent us to the local hospital for blood cultures and a chest x-ray which were both negative. He asked us to return at 2:00. After reviewing all the tests he began talking out loud. He told us that his “gut” was telling him to do a lumbar puncture. He explained to us that while he was in
medical school they told him that if he ever even “thought” about doing a lumbar puncture even for one second, then he should DO IT. He said that he wanted to do it. He explained to us that it could mean the difference between a normal child and not a normal child within a matter of hours.
We agreed to allow him to do it. He took Jonathan down the hall to perform the procedure of removing some cerebrospinal fluid from the spinal column. When he returned he was holding in his hands three vials of very bloody fluid, just like a “blood draw” and he explained to us that it should be clear and look like water.
He immediately sent us to the hospital for a CT scan of the head. I was not allowed to be in the room where the CT was being done as my husband was in there. They only allowed one person to be in there. This was the last time my little boy ever looked directly at me and it was while they were strapping him down for the CT scan and his eyes looked directly at me as if to say, “Mommy, help me!” I left and the test was performed. The radiologist read the CT as a mass in the brain that had hemorrhaged which was later determined to be a ruptured aneurysm within the next week. He was rushed off to ICU with a crowd of people at the side of his gurney. He was intubated and air transportation (Life flight) was arranged while he was being intubated. My baby was on death’s door in a matter of moments.
The weather was bad and the helicopter could not make the trip to take Jonathan to Houston Texas Children’s Hospital. They contacted Schumpert Medical Center in Louisiana and they agreed to accept him despite bad weather. We were allowed to see Jonathan in ICU and he was unconscious and hooked up to all kinds of stuff. I had been crying all along but this is where it got very intense for me. My baby was lying there motionless and hooked up to all those tubes and wires. It was hard for me to see.
They allowed us to escort him downstairs to the helicopter when it finally arrived. The parking lot in the front of the hospital was shut down to traffic to allow the helicopter to land. It was very cold outside and the blades of the helicopter made it even windier outside. They would not allow us to fly with Jonathan in the helicopter but they allowed us to go to the aircraft door and kiss him good-bye. I was sobbing but trying to be positive and wanted Jonathan to know, if he could even hear me, that it would be okay and that Mommy and Daddy would be with him in a little while. They then made everyone back away from the helicopter and the engines started roaring and the blades whirled faster and faster until the helicopter began lifting up off of the ground.
We stood there with family and friends who had gathered with us. It was cold and foggy outside and I stayed there crying not sure if I would ever see my baby again. I think I was shivering from being cold, from being scared, and from being in shock. I stood there without moving, sobbing, and I watched until I could no longer see the helicopter. I continued to stand there until I could not hear it any longer. I felt such a loss that no words can describe.
We had to get into our car and drive to Shreveport now. We were both bordering on being hysterical. The hospital’s Director of Nurses had someone go and put gas in our car for us and even packed us some food and sodas to drink. They told us to be careful and to be sure and eat because we would need to keep up our strength. It was going to take us about 2 hours or more to get there and we called after we thought the helicopter had enough time to reach the intensive care unit. We called from our cell phone to see how Jonathan was doing. They told us over the phone that Jonathan had died in the helicopter once and was resuscitated and now he was in the intensive care unit. They also told us that they were working on him and all they could say is that he was “alive for the moment”.
Once we arrived there we had a long wait before anyone could talk to us because the entire staff was still working on Jonathan. We were a nervous wreck pacing and waiting to hear what was happening with out baby. We were hysterical and crying and the pit of my stomach was in knots. When the doctor was finally able to talk to us he told us that Jonathan had a bleed in his brain. He said that when the brain bleeds, it swells. When it swells, it shifts. And when it shifts, death occurs. He also reminded us that Jonathan died three times and was on total life support. Fred and I cried hysterically. I was clinging to the little fleecy clothing that he was wearing when we took him to the hospital that morning. We were told that they worked on him for more than an hour and felt that his brain went with little or no oxygen for over thirty minutes. There was no hope that he could survive the night.
Over the next several days they did a lot of testing to try and find the source of the bleed. He eventually had an arteriogram which showed the images of the aneurysm. Jonathan became stable but 10 days later, only 4 days before Christmas; his aneurysm ruptured a 2nd time. They said that the CT scan actually showed three times the amount of blood this time when they compared it to his first bleed and they really didn’t know how he survived the first bleed. This time they gave him less than 24 hours to live and said that his brain was already herniating. We were praying all the time, as hard as we knew how, and we were believing for miracles.
We called our Pastor who drove the treacherous roads and arrived to be with us during this very difficult time. We were allowed to stay in the ICU with Jonathan. The nurses told us what his last breath would look like. I didn’t want to see that, I didn’t think I could cope with seeing my baby take his last breath. The nurse offered to be with him so he wouldn’t be alone. When Fred said that he would stay in there, I decided that I would stay too. We were praying and we were told to plan for his funeral. He made it through the night and his vital signs became stable.
Amazingly, Jonathan survived this second brain bleed and Dr. Do, the pediatric intensivist, began looking for someone in the United States that could help Jonathan. He found that there was only one doctor in the country who could deal with our situation in a child so young. There were several physicians looking after Jonathan while in the intensive care unit. One of the doctors, a neurosurgeon, told us to just let Jonathan die and told me that it would be wrong for us to do anything to save his life.
He told me, “He is damaged goods, nothing but damaged goods and to do anything about it is inappropriate”. I was shocked to hear these words being spoken about my baby. He then went on to say, “There are things worse than death”. We were not going to sit back and let our baby have another brain bleed and just wait until if finally killed him, especially after surviving what he had. I told him that Jonathan was obviously a survivor and we were not going to sit around and let another brain bleed take more of his brain function away.
The one physician who could help him was in California at the University of California at San Francisco Medical Center. They had previously helped a one month old baby. Dr. Higashida and Dr. Halbach were going to perform a procedure known as embolization on the aneurysm with interventional radiology. The procedure was delayed because Jonathan had a problem with clotting which is called coagulopathy. They ended up having to give him some fresh frozen plasma and then recheck his coagulation. They did not want him to bleed to death and needed to be certain that his blood would clot properly.
Nine doctors were in there with Jonathan and the doctors told us it would take at least eight hours to finish, at minimum. They had to do the procedure through an arteriogram beginning in a vein at the groin, weaving the catheter up through the stomach, through the heart and into the brain into a vessel the thickness of only four hairs. It was frightening to think about the trauma that he had to go through since Jonathan is only about five months old at this point. But after only two hours, the main doctor doing the procedure came out and said, “Well, we’re done. We can’t explain it but the aneurysm is gone”.
We said that we could explain it because we had been praying so hard. Our entire town seemed to be praying as well. All the other doctors came out scratching their heads saying that they couldn’t explain it either.
Then my son had to have a shunt emergently placed the very next day because his intracranial pressure had become critically high. It drained the pressure off his brain and he began opening his eyes again instead of rolling his eyes downward. But then his shunt worked too well and it pulled the brain away from the skull, ripping the capillaries which caused another bleed, this time it was on the opposite hemisphere of his brain. It is called a subdural hematoma/effusion which they elected to drain externally by drilling a hole in Jonathan’s skull and inserting a suction tube to pull the fluid out. They ended up getting five ounces out of his little head by this draining process. He then had to have surgery to insert a gastrostomy feeding tube since his stomach was anatomically behind his rib cage and couldn’t be placed endoscopically like most. He then was diagnosed with seizure disorder, cortical blindness, severe reflux and high risk for aspiration pneumonia. He has severe developmental delay, has a mixture of hypotonia and does have some spasticity. He is 24 hour care for two people.
Jonathan was recently diagnosed with the following as well: spastic quadriparetic cerebral palsy with microcephaly, cortical blindness, and marked dysphasia. He had global developmental delay secondary to hypoxic ischemic encephalopathy as a result of spontaneous rupture of a left MCA aneurysm. Also has intractable, symptomatic mixed seizure disorder secondary to a rupture of left MCA aneurysm. He appears to have infantile spasms, partial seizures, myoclonic seizures, and generalized tonic seizures.
We saw a physician in Houston who specialized in Hepatitis B adverse reactions and he did a battery of tests. His name is Andrew Campbell, MD. He told us that Jonathan definitely did have an adverse reaction to the hep B vaccine. We had a SPECT scan by Richard Neubauer, MD in Ft. Lauderdale who also stated that Jonathan had toxic anoxic encephalopathy directly related to the hepatitis B vaccine and this was not the first time he had seen it and unfortunately would not be the last time he would see it. We were also told that Jonathan’s intracranial pressure was so intense for such a long period of time from his prolonged horrific screaming that the vessel couldn’t handle the pressure and ruptured. I was told that brain vessels are the thinnest vessels and are not built to withstand intense and prolonged pressure such as screaming for 18-20 hours a day for four months.
During this horrific ordeal he was in the hospital for approximately four months before we were able to finally bring our baby home. His hospital dates were 12/11/97 through 04/08/98. The hospital course began when he went to Shreveport PICU, then we were transferred to San Francisco UCSF, and then back to Shreveport before getting to come home. We never returned home during that entire hospital course. We remained at Jonathan’s side.
Jonathan was finally discharged from the hospital to our home with a very complicated medical regimen and feeding schedule. We had to do something with his feeding or with medications into his g-tube about 17 different times a day. It was around the clock and we were having difficulty keeping up. The stress was beyond anything that I could have imagined. He was screaming horrifically again and even though they did numerous tests, they could find no reason for Jonathan’s screaming. They did tell us that they believed he was in pain for some reason.
He was sent home on many drugs including morphine for pain and Ativan. He was on medications for seizures, reflux, and several other things. We are not nurses. We were sent home with a child that we were scared to be with because he had been through so much and we were actually a little afraid we might do something wrong. We were emotionally and physically exhausted from four months of no sleep, which led up to the aneurysm rupture and the four month stay away from home in a hospital setting. The hospital stay was an emotional roller coaster as there were so many complications and there were days that they said he would not make and other days that he seemed to be doing better. I would not wish this kind of pain on any human being.
Jonathan still requires 24-hour around the clock in-home comprehensive nursing care which is provided by myself (as I had to quit my career), my husband (who has to work to support us), and a nurse who comes from noon until 8 pm, five days a week. We have no help on the weekends at all. We also have a nurse that comes from midnight until 8 am two nights a week so that we can try to get a little sleep. We have no family around here. Our church family helped us for a long time by brining meals to our home, but since time has passed, our need has faded in people’s minds and we no longer receive any help from the church.
Jonathan has a compromised immune system and cannot be around other kids or anyone that is sick. We are basically homebound. Upon coming home from the hospital He was having hundreds of seizures a day, more than we could count, every day. We started the ketogenic diet for seizures and changed his medications and he now is having somewhere between 30 and 90 seizures a day now.
He is g-tube fed every four hours and because of his reflux he must be held upright during feeding and for one hour afterward to prevent aspiration allowing him to digest. Because the ketogenic diet consists of 90 percent fat, it could be fatal to him if it were to get into his lungs. He has multiple medications that must be given throughout the day and must be crushed and put into a syringe, then into his feeding tube. He cries a lot and requires full attention because he could gag and aspirate stomach contents into his lungs. He stays very constipated and the ketogenic diet makes this worse. We must monitor his ketones, seizures, urine output, and stool to ensure that everything is in balance.
He still does not sleep just a whole lot. He goes to bed around 3 am each “night” and sleeps until somewhere between 7 and 10 am. During the time that he is sleeping between 3 am and 7-10 am he frequently wakes up having seizures which require interventions such as suctioning, repositioning to prevent aspiration or suffocation. Every time Jonathan wakes up, he has seizures without exception. We must be alert and able to provide the necessary interventions for him when he does.
Jonathan rarely will sleep without waking up. This is exhausting for both Fred and I. I take care of Jonathan until he goes to bed and I get up with him every time he awakens throughout the night. By 6:45 am, Fred gets up and takes over. Fred gets the feeding pump ready and gives the seizures medications both of which are due at 7:00 am. Fred watches Jonathan until he is finished feeding and is asleep again, then he gets ready for work. That is when I get up again to start the daily cycle all over again. We never really get much rest. I have been surviving on only 4-6 hours of very fragmented sleep every day.
Jonathan will usually take a nap (lasting anywhere from 5 minutes to 40 minutes) during the day and a maybe a 30 minute nap in the evening. Someone must be with him, holding him, consoling him, feeding him, caring for him during all his waking hours. The primary caregivers are either Fred or I as his parents. He also has to sleep with his head elevated in his hospital crib because of the reflux. We also have to position him and turn him when he wakes up in an attempt to prevent skin breakdown and sores because he cannot roll over or reposition himself.
He had been sick with a virus that was going around. He needed breathing treatments every 3 hours around the clock. He literally did not close his eyes to sleep for four full days and four full nights. He had fever that lasted for seven days. We had to bathe him with a cool cloth, he had no clothes on except his diaper, and we were monitoring his temperature to make sure that it didn’t continue to rise. My husband ended up sick at the same time and I had to be the caregiver around the clock. I could not sleep because of Jonathan’s medical needs, and our nurse was also sick during this time.
It took us a while to receive some type of assistance to help us with Jonathan’s nursing care. We had been denied everything except the Early Childhood Intervention Program which doesn’t provide nursing care; it provides therapy at home for developmentally delayed children between the ages of 0 and 3. We applied for SSI, Medicaid (twice), MDCP (on a waiting for nearly 2 year but finally did receive), CLASS (not in our area yet, but on the waiting list for when it does come here), CIDC, Blue Cross/Blue Shield, CCP, Burke Center (local agency), Medically Needy Program, and the United Cerebral Palsy Foundation. My husband makes about 75.00 a day and that seems to be too much for us to qualify for any program but not enough to pay for the therapy and medical things that Jonathan needs to help in his recovery. My husband is supporting a family of 3 and trying to stretch the money to pay for all the extras that insurance doesn’t pay for.
We do all that we physically can, but when we get sick from getting no sleep, not eating right, and not taking care of ourselves…what will happen to Jonathan? We don’t want to get to that point. I believe my son was injured by the hepatitis B vaccination given to him without our consent or knowledge when he was three days old as a standard hospital policy. This is a federally recommended vaccine which was mandated by the State of Texas. I also believe that his brain was further insulted by the second Hep B vaccine compounded by the DTaP that was a hot lot.
When I heard that Dr. William Reynolds Archer, M.D., the Commissioner of Health for the State of Texas made sure that all Texas kids were to receive this vaccine, but then exempted his own children, I scheduled a conference call with him. I wanted to know why his children were exempt from this vaccine. I provided him with all Jonathan’s background prior to our phone call so I would not have to repeat the complicated and long story on the phone with him. He knew that I was calling regarding vaccines but did not know that I was going to question him personally. He had another doctor in his office with him and I was on speakerphone.
I later met this doctor at a public hearing in Austin who confirmed what I am about to share – and she confirmed it as a matter of public record. He said that he indeed had exempted his own children because he was concerned about its safety. He said his children had allergies and asthma and didn’t want to give it to them. He could write his own medical exemption since he is a physician. We are not in a position to do that. He resigned his position last year. Basically he was saying that all kids had to have this vaccine, but not his own kids because he was concerned about its safety and he wanted to protect his kids.
Where is the government now that we need help in dealing with the repercussions of this vaccine injury? We were told many times that if we would just get a divorce we would qualify for all kinds of help in a second. We are Christian people and in this type of stressful situation, it is hard enough to keep your marriage and family together without the government encouraging you to divorce.
We were also told that if Fred would just quit his job we would qualify. It is true that if he quit we would qualify but he is an honorable man and is working to pay our bills. He makes less in a day’s work than our nurse is paid for working 6 hours here. We cannot afford to pay for what my son needs on my husband’s salary and we make too much to qualify for any assistance. We are the working class that seems to slip through the cracks. We need to be able to take care and provide for Jonathan for the rest of his life. We do not want to place him in an institution either. That is not an option.
I thank you for allowing me to make this lengthy statement. I love my son dearly but I am very angry that this was allowed to happen. I am angry knowing now that this vaccine was never tested on babies and that my baby had to be a guinea pig. I am angry that I found out no double blind studies were ever done on this vaccine and that this vaccine has no safety studies because there are none are on file with the proper authorities on this vaccine. I am angry to find out that there is no scientific evidence or data to show that this vaccine is even safe or effective for what it is intended to do.
My son has had his entire life stolen away. Here are some examples of what we should be doing versus what we are currently doing because of this vaccine injury.
1) We should be buying a tricycle, but instead we are buying a handicap stroller.
2) Should be buying sneakers but instead must buy orthotics to keep his bones from breaking while bearing weight.
3) Should be playing T-ball, but instead he must participate in physical therapy, occupational therapy, vision therapy, speech therapy, so that he can learn to hold his head up, use his arms and legs, learn to use his eyes, and learn to swallow his own saliva.
4) Should be watching TV like Barney but instead we are doing therapy in which we must put a flashlight in his eyes to help him learn to see.
5) Should be buying candy or treats but instead have to purchase feeding tubes and feeding bags.
6) Should be buying Superman underwear but instead will have to continue to buy diapers and incontinent under pads.
7) Should be able to have a daily bowel movement but instead have to take medications and multiple interventions in order that he can eliminate.
8) Should be going to the park or Disneyland but instead we make trips to the neurologist, pediatrician, gastroenterologist, orthotist, ophthalmologist, neuro-ophthalmologist, pediatric physical medicine rehabilitation physician, ketogenic specialist, otorhinolaryngologist, and neurosurgeon just to name a few.
9) Should be watching his height and growth on the wall chart and watching his weight, but instead we must monitor spasticity, seizures, daily urine ketones, ventriculoperitoneal shunt function, blood work, sleeping, urine and bowel output due to increased seizure frequency.
The doctors have told us he will never be able to run and play ball with the other children. He will never go hunting with his Daddy, which was my husband’s dream. He will never do all the normal things that kids do.
His life and our lives are forever changed because a vaccine adverse reaction stole his life.
This vaccine also stole the life that we had planned for our family. I had to give up the income from my own business and any future income in order that I could provide around the clock care for my severely injured son. We must take turns caring for him in order to try to get some rest. My husband helps with Jonathan and we work together during the weekends to provide 24-hour a day care.
Thank you for again for allowing me to share my son’s story and I plead with you to make the right decision for this child and for his future.