Pbmom's Blog

Autism and the Vaccine Controversy, Part 1: Understanding my son’s history.

While I respect your viewpoints about vaccines not causing autism, I would suspect most of you having such an opinion do not have children with autism. I ask that you also respect mine. I would also suspect that many of you have not done actual reading of the real peer-reviewed research on both sides of the issue, but rather are regurgitating what the media is reporting. The media are not the journalistic pioneers they used to be; rather, they read from press releases sent out to fill the 24-hour news cycle. Many of those press releases come from governmental agencies.

Contrary to media hysteria, most parents with autism are not in favor of a no-vaccine society. We are highly intelligent mothers and fathers who were forced into a situation where our children were ill or changed or both, and like any good parent would, set about to find what happened. One minute they seemed fine and then the next they were just gone. The media makes us out to be psycho parents who are out to harm society by choosing not to vaccinate any further.

In order for you to understand how I came to the conclusions I have, you must understand Patrick’s history.

When Patrick was born on Dec 17, 1995, we thought he was two weeks early. The midwife felt because he was peeling he might actually be more like two weeks late. Our midwife thought we were having a girl all along (we never wanted to know; there are very few surprises left in life). Up to the moment he popped out, she was saying, “Come on Katherine Elizabeth.” She said, “Oh my, Katherine has a BLEEP.” And I remember saying, “Oh, honey you have a little buddy!” before I passed out from sheer exhaustion, and well, I was hemorrhaging, too, so that probably had a little bit to do with the passing out. It was quickly controlled though.

I had an arduous labor with contractions starting 8 minutes apart at 8:00 a.m. on Saturday. I wasn’t dilating. Five-minute-apart contractions occurred for almost 23 hours. I chose to deliver at a free-standing birthing center; however, I asked to be transferred to the hospital because I felt something was very wrong during labor. Call it mother’s intuition. The midwife didn’t transfer me and convinced Jeff that I was delusional. Twenty-nine hours later, Patrick was born blue and limp, and had no reflexes (an Apgar of 3 at 1 minute, 9 being the top score). He received what is called blow-by oxygen and he pinked up, but he still had no suck reflex. With an Apgar of 3, a baby would be spending some time in the neonatal unit of a hospital. Despite the fact that he wasn’t able to breastfeed, I was sent home six hours later. It wasn’t until 9 years later that anybody ever said the words “cerebral palsy” to me (due to birth trauma and lack of oxygen). He left the center with an Apgar of 8 at 5 minutes (9 is the top score). The lactation consultant met us at our house at about 9 p.m. in the evening.

When I came back for my followup visit the next day, she told me how disappointed she was in me with my labor because she had had high hopes for me. I told her I felt completely abandoned by her. A few weeks later she was to blame my history of sexual abuse on my prolonged labor, not on the fact that she went off and went to sleep and left Jeff and I totally alone, two people who had no clue what we were doing. Later I found out from the chief of staff at a local hospital that no physician in the area wanted to be associated with her because she made poor decisions. I wish I had had this information prior, but we have to deal with the choices we make and move on.

The first week at home was horrible. He wouldn’t sleep. I wasn’t producing any milk. By the fourth night of no sleep I was getting close to being psychotic. My lactation consultant used a hospital pump to pump me and only 1/16 of an ounce was coming from one breast; 1/32 of an ounce from the other. While others were saying I wasn’t adjusting to motherhood very well, all this time my baby was starving. We got some soy formula into him and he became the normal baby. It was a great Christmas present (his jaundice also resolved with the intake of formula). Meanwhile, I was getting worked up for a pituitary tumor.

On January 3, 1996, he received his first injection, a hepatitis B injection. It was then he started screaming for 18 hours a day. This becomes a very important fact later on. The only thing that comforted him darkness, being held so tight Jeff and I had to wear wrist splints from our wrists being so hyperextended (he wasn’t sucking so we had to hold his pacifier for him) or moving in the carriage. I started walking 3 miles a day just to get a break from the constant crying. That pregnancy weight came off VERY fast.

On Feb 21, 1996, he received his DPT, Hemophilus influenzae shot #1, his second hepatitis B injection, and I opted for the IPV (inactive polio vaccine) because I was immune-compromised and I heard the oral polio could put me at risk to contract polio with my immune state. The crying was much worse.

On April 17, 1996, he received another DPT, another IPV, another Hemophilus influenzae B shot (also known as HIB).

Two months later, in June of 1996, he received another DPT, this time an OPV, his third HIB and his third hepatitis B. This child was still screaming. I walked an intensely fine line bordering on insanity. I was on production at work so when I wasn’t typing, I wasn’t making any money. My husband was trying to work late to make up for what I was not making trying to deal with this screaming child all day long. We had no family to help close by to give me a break. They kept saying colic; this was NOT colic. My friends who had children who did have colic observed him agreed with me.

In September he got his first MMR. These immunizations play an important role later on (the mercury preservative thimerosal was in all of them).

By October, he seemed to be better. His milestones were behind, but that didn’t surprise me at all with him doing nothing but crying. My pediatrician suggested the Early Childhood Intervention program that was a state-based program that could get him OT, PT and speech help. By about February, I was watching the OT bouncing him on a ball and I said, “With no disrespect, how is that helping him with his gross and fine motor delays.” She said, “Oh, he has a sensory integration disorder.”

I scoured the internet searching this phrase. Just about every time, I was led to a site about autism. He wasn’t eating solid food still (now we know it was because the cerebral palsy affected his mouth muscles greatly).

In March, he got chicken pox and had an eardrum rupture, meaning antibiotics, which means his immune system was a bit depressed. In April, he got his second MMR, DPT and polio, and he disappeared. It was THAT abrupt. The affect of his face changed. I noticed he wasn’t responding to us; it was that quick. We thought maybe he had a vaccine injury that caused him to be deaf. We would throw phone books behind him and he had no startle reflex.

When I was cooking for Easter and I told Jeff to keep an eye on him. I was at the sink with the water running and talking with a friend (Jeff was talking to her husband in the other room). Patrick stealthly came into the kitchen and put his hands up on the oven, the outside of which was very hot and he started to cry but his hands didn’t move. Anybody knows that if you touch something hot, your hand or finger automatically pulls away. It was the first evidence I had of him possibly being brain-injured. Fortunately, we grabbed him (my friend was a nurse) and we held his hands under the water, acting quickly enough to stop any permanent damage.

I kept reading, scouring the internet. There wasn’t as much out there on autism as there is today and I read it all. I thought he had symptoms of autism and that everything I was reading said it couldn’t be diagnosed until he was 2 or 3. I told Jeff that he was to mark this day when I said it because this child would be diagnosed with autism. Jeff told me I was reading too much.

Jeff’s best friend’s dad died in May of 1997 and he went to the funeral in Florida. His friend’s wife had twins 3 weeks before Patrick was born. When Jeff came home, on the ride home from the airport, he started crying and said after observing his friend’s twins, something was indeed very wrong with Patrick and we needed to get him evaluated.

We were referred to a great doctor. In May or June of 1997, Patrick received the diagnosis. It didn’t matter to me that he got this diagnosis; my main mission was “Okay, what do we do now.” All I wanted to know is what we needed to do to treat this.

At the time he was diagnosed, the incidence of autism was 1 in every 10,000 children; the statistic today is 1 in every 91 children. It is at epidemic proportions. People will say, “This doesn’t affect me, so I have no reason to learn about it or even care about it.” It does affect every single taxpayer in this nation now and in the future.

So this gives you background information about what the first 15-18 months of life were like with our son. In part 2, I’ll discuss how we began discovering the links between vaccines and autism.