Testimony of Judy Lafler Converse
Before the Subcommittee on Criminal Justice,
Drug Policy and Human Resources
Government Reform Committee
U.S. House of Representatives

May 18, 1999

My name is Judy Lafler Converse. I live on Cape Cod in Massachusetts. I regret having a reason to speak here today. I have no other reason to do so except for the sake of truth, and to spare other families the trauma and loss we have endured.

I also wish to preface my comments by stating that I hold a master's degree in public health and am a registered dietitian. I was trained to accept and encourage immunization and was in no way inclined against immunizing my son, whose name is Benjamin. He is now two and a half years old. There is no history of autism or seizure disorder in either my family or my husband's family. If Ben were here in front of you today, he would seem completely normal, but his appearance belies the struggle he faces every day.

Ben was born full term and normal in every way. His birth was vaginal and without interventions or drugs. His Apgar scores were 9 and 10. All his reflexes were recorded as normal. He was very peaceful. Before discharge, Ben was immunized with Recombivax HB against hepatitis B virus. Neither I nor my husband recall receiving informed consent for this vaccine, nor do we recall seeing Ben get the shot, but it is recorded in his immunization record. No signed informed consent specific to the hepatitis B vaccine was present in the copy of Ben's medical record which we recently requested. Ben's fourth night in this world was his first at home, and we arrived there at about 5 PM. Five hours later, he had his first seizure. Frantic calls to the maternity staff and pediatrician on call fell on deaf ears. The extent of the medical advice we received was to put him on our clothes dryer and turn it on. No one mentioned the vaccine. No one expressed concern that Ben was turning blue, that he couldn't stop screaming, or that he appeared to be having tremors and full body spasms.

Ben had three more seizures, losing consciousness, in the next 8 days, as well as several episodes of arching screaming without losing consciousness. He was vomiting forcefully every day, had a recurring mild fever and eczema, was unable to remain asleep, soaked several diapers a day with glossy mucous and diarrhea, and cried constantly. No one thought any of this was out of the ordinary. I was told these things were normal for a breast fed infant. He was only 12 days old. The third time he passed out, he did not resume consciousness. His breathing was slow and shallow and he was cyanotic. At the emergency room, Ben was tested for several diagnoses and all were negative or inconclusive. He was observed overnight. After nearly losing him, we were sent home the next day with a shrug. No one knew what was wrong, no one mentioned the vaccine, no one expressed interest or concern for the events of the previous week, and no one advised us in any way about what appeared to be seizures and a struggle for Ben's life. Ben's medical record even states, in a gross understatement, that his first days of life prior to this admission via the emergency room were "uneventful". The same doctor who wrote this note privately admonished me for agreeing with the attending pediatricians to spare Ben the trauma of another spinal tap. Convinced Ben had meningitis, he said, "it's people like you who cause lifelong mental retardation." Ben's discharge note states only that he had "apnea", despite having tested negative for it. We entered the hospital hoping for answers, but we left with absolutely none.

Ben worsened with the second hepatitis B immunization at 4 weeks. It was at this moment that I realized he'd been given the shot at birth and that this may be causing his problems. At two months I asked Ben's pediatrician to postpone his immunizations. I asked only for a delay so that Ben could continue recuperating. I knew that accepted pediatric practice dictates that a sick child should not be immunized. The doctor refused my request. When I persisted, he told me we could either immunize Ben on schedule, which we had to do because it was the law, or we could call DSS. With this threat, Ben was immunized. All of his symptoms worsened. At four months, Ben was immunized again. At six months, I refused further shots and switched doctors.

Ben was seen by neurologists and developmental specialists, but no one could explain why he was too floppy to attempt normal developmental tasks, was unable to sleep day or night, suckled poorly, kept vomiting, why eczema persisted despite being breast fed, or why he passed out in shock when he heard Velcro, plastic bags, or aluminum foil. By age 10 months, Ben could not pull himself to sitting, could not crawl, and had difficulty rolling over. We sought help from the Early Intervention Program and Ben qualified for services based on his gross motor delays. For the first time a formal acknowledgment of his delays was drafted. Reflexes which were normal at birth had disintegrated and his protective responses were inexplicably delayed. A developmental therapist taught him to crawl.

Once he walked, he fell on his head constantly, and toppled backwards when sitting down. He had no skill or strength to go from standing to sitting, but would fall like a tree, without throwing out his arms to protect himself. He became extremely fearful of bumps to his head and soon the slightest touch there, or just the anticipation of being bumped, would produce a seizure. He would have two or three seizures a week during his infancy and early toddlerhood. The events of these seizures never vary, and Ben had one as recently as two months ago. Ben cries hard with one breath, which seems to empty his lungs. He then is silent, mouth open, not breathing, and struggling for air. As he suffocates, he turns red, then blue, then purple; his extremities become blue; his limbs flail about as if he is drowning. Often, on his left side, Ben will have a flapping tremor of his hand while his arm, neck and shoulder are rigidly flexed. As his asphyxiation is complete, he is gray, his eyes lose their luster and open, seeing nothing; his pupils dilate; his eyes roll back into his head and he then is unconscious. He usually regains consciousness quickly once his muscles are relaxed and he can breathe again, but these episodes are traumatic, exhausting, and frightening for Ben. He is sad and scared in the aftermath. They invariably occur in response to a stimulus he can not manage, whether it is auditory, anxiety-related, or from a fall or bump. Even though Ben had seizures like this when he was just a few days old, we were told they were breath holding spells which he consciously contrived in response to our over protectiveness. The doctors withdrew and not only became unsupportive, but blaming: They essentially told us we were causing Ben's seizures, odd behaviors, and developmental delays by bad parenting. I was told I "overnursed" him by one neurologist and asked "why I needed something to be wrong with my son" by a pediatric developmental specialist. I believe this is a grossly ignorant assessment of what may be grand-mal seizure episodes. Ben also appeared to have petit mal seizures in which he would roll back his eyes and grimace, or suddenly pierce the air above his head with his left hand, elbow locked and hand quivering. These occurred randomly; he would endure the brief spasm then go back to whatever he was doing.

What are our lives like now? Ben was diagnosed with sensory integrative disorder last fall. Last week we learned he is on the autism spectrum as well with a diagnosis of pervasive developmental disorder. This means he can't reliably sense, organize, or prioritize the information his brain receives about anything - gravity, balance, sound, light, emotion, anything. He learned to walk without sensing when he was falling down. He can't tolerate change, being touched without notice first, the feel of food in his mouth, or even the presence of his own peers, whose random squeals and movements terrify him. He can't be placed in group day care and has extreme separation anxiety. These few examples don't begin to describe how profoundly limited Ben is physically, developmentally and socially. Though Ben is extremely bright and verbal, we don't know if Ben will be able to attend school since he can't function in the bright, noisy environment of a schoolroom.

In many ways we are lucky. It is my belief that my nutrition training served me well. I took steps immediately upon suspecting vaccine damage that I believe saved Ben from dying or lapsing into profound autism. Because of this very early and diligent dietary intervention, plus intensive efforts in occupational therapy, Ben has had the opportunity to recover some functioning. With more relentless effort, we fervently hope he will be able to function like other kids. But my husband and I have lost friends, work, income, and nearly lost our marriage as we struggled against the medical providers who were supposed to be helping. Our pediatric providers were so blind, so biased against the possibility that a vaccine could be damaging that, I believe, my son would have died if not for our persistent refusal to follow their advice.

We have had little pediatric guidance or support throughout this journey. Though Ben's current physician agrees not to immunize him and has supported all referrals we have requested for treatment and evaluation, she has not reported his reaction and discouraged me from doing so. She told me we would be harassed by the state department of health and forced to prove damage from each vaccine with invasive blood tests. When we asked for a medical waiver she gave us only a vague philosophical one. She acknowledged to me that the hepatitis vaccine is an unnecessary affront to an infant's well being and that she refuses to give the younger two of her three children this vaccine, because it is of no benefit.

I have absolutely no doubt in my mind that the hepatitis B vaccine damaged my son and caused his developmental disorders. Not just because he was normal at birth, full term, with a family history void of such problems, and with no other events to precipitate such an array of symptoms, but because the progression of events after the shot is in keeping with criteria for a hepatitis B vaccine adverse event as listed by the Vaccine Injury Compensation Program. This is true with one exception: It took longer than four hours for my son to have his first seizure. All symptoms of anaphylaxis were present but had a slower onset and persisted for months. In my mind this fact in no way exonerates the vaccine industry or those that make vaccine policy. It simply means that thousands of healthy newborns can slip through the cracks with severe reactions unacknowledged and untreated; thousands will die, have delays, or become autistic and their pediatric providers will be just as uninformed as ours were.

One final comment as an individual trained in public health sciences: After regarding data on hepatitis B in the US, it is plain to me that a program to vaccinate newborns is of no worth to anyone except those who sell vaccines. The immunity it imparts wears off before a child is old enough to have sex with an infected partner or use contaminated needles, which are the foremost modes of transmission. There is no benefit, and only risk, for newborns receiving this vaccine.