Spastic quadriparetic cerebral palsy with microcephaly, cortical blindness, marked dysphasia

Jonathan's story
From: Tammy Carrington

My husband and I 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 until my son became sick and I had to shut it down in order to care for my child.

When we married we decided that we would wait 2 years before starting our family. When I found out I was pregnant after 2 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 the baby would be getting only the best source of nutrition. I read everything I could about each stage of pregnancy and I exercised each day. I felt great and my blood work was the best they 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 thought it would probably be uncomfortable for me but it would be better for him. I had absolutely no complications during my pregnancy.

When the day finally arrived that my water spontaneously ruptured at 41 weeks my experience with labor began. I went through 19 hours of labor and the last couple of hours were the most intense since they had to initiate Pitocin. Finally at 8:19 PM on 07/31/97 my 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.

I researched and read everything I could lay my hands on while I was pregnant so that I could make informed choices. The one thing that I was never told about was the hepatitis B vaccine that my son would be given in the hospital just before going home. If I had the opportunity to research this vaccine prior to him getting it, he would have never received it.

He was given the federally mandated hepatitis B vaccine when he was 3 days old just before we left the hospital. Within 4 hours he began screaming at the top of his lungs and we couldn't get him to stop. We called the hospital nursery and they told us that he was probably just scared not being in the environment that he had become accustomed to (with the sound of incubators humming etc.). My little boy never slept and screamed a high pitched blood curdling scream all his waking hours. He only slept for short periods (10-15 minutes) at a time and never slept for more than 4 hours in a 24 hour period. We took him to the pediatrician and we were told that it was colic and he would out grow this. Since this was our first child, we didn't know what was normal and what wasn't. We made many calls to the hospital staff during those early hours. The pediatrician told us that this was colic and that he would outgrow it by three months of age or so.

Jonathan continued screaming and we couldn't take him into public because we couldn't control his screaming and certainly couldn't stop it once it started. His screaming was so intense that his face would become blood red and he had a look of "panic" on his face that I could do nothing to help. He would wake up screaming even if he only slept for 10 minutes, in fact his screaming would start before his eyes opened. He lost most of his baby hair. He got his 2nd hep B shot when he was 2 months old and the screaming continued. He was horribly constipated too and we ended up in the pediatrician's office several times with this and they had to "stretch his sphincter".

We thought we were going to go nuts with the continual screaming because we spent all our days and nights trying to console him and make him feel better to no avail. We had to hire some help so that we could get some sleep, we were so exhausted.

When he was 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 and I gave him 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 and requested that we come in. I called about 9:30 am and said that we needed to come in "this morning". I really thought it was an earache as I 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 see Jonathan before lunch. While I was getting Jonathan ready he threw up and was heaving. He had not eaten anything since the night before. He became very pale. Our 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 did some labs in his office which were all negative. He 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 and he had a gut instinct that he wanted to do a lumbar puncture. He explained to us that in med school they told him that if he ever thought LP for one second, then DO IT. He said that he wanted to do it. The LP revealed 3 vials of bloody fluid, just like a blood draw and he told us that this should look like water. He sent us immediately to the hospital for a CT scan of the head. The radiologist read the CT as a mass in the brain that had hemorrhaged. (Later determined to be a ruptured aneurysm within the next week). He was rushed off to ICU and air transportation was arranged while he was intubated. My baby was on death's door in a matter of moments.

He was life flighted by helicopter to Shreveport, Louisiana (Schumpert Medical Center) and he died in the helicopter and was resuscitated and began having seizures. Once he got to the PICU he died two more times and they resuscitated him. They worked on him for over an hour and his brain went without oxygen for a total of approximately 30 minutes. He was on total life support in a coma and was given no chance for survival through the night. 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. He survived and 10 days later his aneurysm ruptured a 2nd time. They said that there was 3 times as much blood this time and they didn't know how he survived the first bleed. They gave him less than 24 hours to live this time and said that his brain was already herniating. We were praying all the time and believing for miracles.

He survived and we found that there was only 1 doctor in the country who could deal with our situation in a child so young. One doctor in Shreveport (pediatric neurosurgeon) told us to just let Jonathan die and that it would be wrong for us to do anything to save his life. He said, "He is damaged goods, nothing but damaged goods and to do anything about it is inappropriate". We were not going to sit back and let our child die once he had already survived what he had. We then went to California where he was going to have embolization of the aneurysm with interventional radiology. Nine doctors were in there with my son and it was going to take 8 hours (they had to do the procedure through an arteriogram in through a vein at the groin, weaving a catheter up into the brain), but after only 2 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. All the other doctors came out scratching their heads saying that they couldn't explain it either.

My son had to have a shunt placed the very next day because his intracranial pressure became too high. His shunt worked too good and caused a bleed on the opposite side of his brain (subdural hematoma/effusion) which had to be drained externally. He then had to have surgery to place his G-tube because his stomach was anatomically behind his rib cage and couldn't be placed endoscopically like most. He was diagnosed with 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 2 people.

Jonathan was recently diagnosed with the following as well: spastic quadriparetic cerebral palsy with microcephaly, cortical blindness, marked dysphasia. He had global developmental delay secondary to hypoxic ischemic encephalopathy as a result of spontaneous rupture of a left MCA aneurysm. Intractable, symptomatic mixed seizure disorder secondary to rupture of left MCA aneurysm. He appears to have infantile spasms, partial seizures, myoclonic seizures, generalized tonic seizures. These are improved on the ketogenic diet.

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.

My son is now 29 months old. He was in the hospital for a total of just over 4 months before we were able to bring him home. Hospital dates were 12/11/97 through 04/08/98. We initially went to Shreveport then we were transferred to San Francisco and then back to Shreveport before coming home. We never returned home during that entire hospital course. We remained at Jonathan's side.

My son requires 24 hour 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 is paid by our insurance company. She is here 6 hours a day 5 days a week. We have no help on the weekends at all. We have no family close by and our church family has stood behind us.

Jonathan has a compromised immune system and cannot be around other kids or anyone that is sick. We are basically homebound. He was having 100-200 or more seizures a day, every day. We started the ketogenic diet for seizures and changed his medications and he now is having 30 or so a day now. He is g-tube fed every three hours and because of his reflux he must be held upright during feeding and for 1 hour afterward to prevent aspiration. With the ketogenic diet, because it is compromised of 90 percent fat, if it were to get into his lungs, he was be in great trouble. He has 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 of his gagging. He stays very constipated and the ketogenic diet makes this worse. He gets enough Milk of Magnesia every day to move an adult, and sometimes this doesn't help him. We end up having to use BabyLax and Baby Fleets enemas. 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. He will usually take a 1 hour nap during the day and 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. That would be myself and his father. He must also sleep in an incline position on a reflux wedge in his crib.

Recently he has been sick with the virus that has been going around. He needed breathing treatments every 3 hours around the clock. He literally did not shut his eyes for 4 days and 4 nights. He had fever that lasted for 7 days. We were bathing 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 and I had to be the nurse around the clock.

We have tried to receive some type of assistance to help us with nursing care. We have been denied everything except the Early Childhood Intervention which doesn't provide nursing care, it provides therapy at home. We applied for SSI, Medicaid (twice), MDCP (on a waiting list with a 3-5 year wait), 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, United CP Foundation, all of our state and local legislators all to no avail. My husband makes about 75.00 a day and that seems to be too much for us to qualify for any program. 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 desperately need some help with nursing care. If my son were on Medicaid, he would be receiving 16 hours a day of care, 7 days a week. That would change our lives and help us to give Jonathan better care. 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.

My son was injured by the hepatitis B vaccination and it was federally mandated. Where is the government now that we need help in dealing with the repercussions? We were told that if we would just get a divorce we would qualify 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 seem to slip through the cracks.

We are desperately looking for solutions and options. We are not hopeless. I believe that there is a difference. We have a case pending with the Vaccine Injury Compensation Program and I understand that it will take years before that is finished. I am sure that I have left out many programs that I have called and others that we have applied for but we have not found our answer yet.

I tried to include everything that I could remember, but these days my memory isn't what it used to be. Please feel free to e-mail me at mailto:fred_tam@lcc.net

Sincerely, Tammy Carrington Tweet