Friday, March 4, 2011

A mother's guilt

I feel guilty. I know I didn’t do anything wrong. At least not intentionally. Ever since we got a diagnosis for my boys, I knew that they were born this way. I didn't cause it from my actions. That’s what we’re told. Autism is genetic, right? Over the past few years, I learned enough to no longer believe that autism is purely a genetic condition. Rather, I believe that in most cases it is an immunological response to an environmental assault, which triggers the cascade of symptoms into autism.  
As I sat enjoying my morning cup of coffee and scrolling through Facebook, there it was. A friend posted a status update about her son and their recent findings from the doctor. Her words gave me pause. Things suddenly started to click in my brain. What it this? What about that? Feverishly I pulled up Google and began searching for more information. There could be something to this. As the morning progressed, I felt my head dizzily spinning with the information and possible implications.
Then I found this scientific case study. It pierced my heart. Autism may have started from me. And, I’m not talking about my genes. From me, giving birth. Yeah. That’s it right there. I feel it now, washing over me. Guilt. Did the cascade into autism start on the day of their birth?
Autism. PANDAS. Group B Streptococcus. Lyme. XMRV. Biofilm. These words are all related and I’m just now beginning to connect the dots.
Environmental Assault at Birth #1: Group B Streptococcus
I had Group B Strep (GBS) in my third trimester with both of my boys. Through exposure of the baby from the mother during birth, GBS is the most common cause of life-threatening infections in newborns. Although I was given IV antibiotics during labor, both boys were both exposed to it. Monkey came so fast that he didn’t get the effect from the full prescribed amount. Many moms report having a child with autism and also having GBS during labor. GBS is implicated in PANDAS.
Environmental Assault at Birth #2: Pitocin
I was given Pitocin with both of my boys to induce labor. Pitocin is the synthetic form of the hormone oxytocin. Oxytocin is considered the “love hormone,” biologically triggered by experiences related to emotional bonding. People with autism have a difficult time making or maintaining emotional bonds. Perhaps this is a causal relationship? Sometimes the baby is not able to tolerate Pitocin. This was the case with Prince Charming. He had several heart decelerations, causing the labor to progress and then stall several times as they stopped and started my Pitocin drip. At one point people came running into the room after a significant deceleration, and a nurse had to manually rub my son’s head to try to get him to snap out of it. Each time he stabilized, the pitocin drip was started up again. Many of the autism moms I know were also given Pitocin.
Environmental Assault at Birth #3: Antibiotics
Due to being a carrier of GBS, I was given antibiotics during labor. Antibiotics set up the body for dysbiosis, inviting the bad bugs to take up shop and colonize when the good ones are wiped out. It’s easy to end up with gut issues and/or fungal infections following a course of antibiotics. With Prince Charming, he ended up getting the full course of antibiotics during labor. He had lots of issues as a newborn with thrush (fungal infection) and chronic constipation. Monkey had problems with chronic diarrhea. Lots of gut issues. At the time, I had no idea that these things could be related to the antibiotics given at birth. Lots of kids on the spectrum have gut issues related to or caused by antibiotic usage.  
Environmental Assault at Birth #4: Fast birth
Monkey’s birth was quick. He came so fast (Pitocin!) that he had a perfectly formed head when he arrived. There was no compression of his skull, as you would typically see. What I’ve learned since then is that the slow progression of a normal vaginal birth is really good for the baby. There is fluid in the baby’s head (sinuses, ears, etc.) and it is effectively squeezed out through the birthing process. When the baby is born quickly or via c-section, this natural process doesn’t happen and the baby is more prone to infection. Monkey had chronic ear infections. As a result, he had a speech delay due to a loss of hearing because he had so much fluid in his ears for so long. He went through several rounds of antibiotics and then ended up with 2 sets of tubes over the course of a couple of years. Many kids with autism have lots of trouble with ear infections.
Environmental Assault at Birth #5: Vaccines
Both of my boys received their vaccines on time, because that’s what “good” parents do. On the day of their birth they were given a vaccine to help keep them from getting a sexually-transmitted disease. Sounds pretty crazy, doesn’t it? No matter what, I got their vaccines on time. It didn’t matter if Prince Charming was in the middle of a huge thrush outbreak or if Monkey had a cold. They got those chemicals injected into their little bodies, even though they were already under immunological stress. There’s a lot of regret and guilt with this one, for sure.        
There is a very large question mark now taking up residence in my brain. I’m not very educated about all of the implications of Lyme, PANDAS, and everything else. I need to know more. Do you know about these topics? I would really welcome your input. I have a lot to learn! If you have something to share, please do. It will be a work in progress as I continue to sort through all of this.
Now I know that I contributed to their autism. I didn’t mean to, but I did. That’s hard to think about. I don’t know what it is about mothers and guilt. Usually it’s the mothers making their children feel guilty about something, but here I am feeling guilty as the mother. I know that there’s nothing I can do about the past. But, that nagging feeling is there. I think it will be around for a while. All I can do is work through it by learning more and continuing in my resolve to do better for my kids. They deserve nothing less than that.


Self Care Girl said...

First of all: BIG HUG!

Second, I know a lot of Moms (I am a mom myself) and guilt is felt by all of us frequently during our parenting lifetime.

I don't think it is all bad though. I think guilt is a sign of our commitment to be good parents. It definitely reflects our capacity to love and our desire to do right by our children. Be sure to give that part of you kudos!

Unfortunately we cannot be perfect...and we cannot change the past. We only get today to work with and we can only try to be better and do better.

I admire your courage and resolve. It sounds to me like you are a fabulous mom. Your kidlets are lucky to have you in their camp!

Caffeinated Autism Mom said...

Thank you! <3

Anonymous said...

Your post sounds all too familiar, right down to the GBS, antibiotics & pitocin. So frustrating, I had a horrible doctor who did not communicate well what he was doing and shot me down when I questioned what he was doing. With baby number two I still had to get the antibiotics for GBS, but I had probiotics waiting at home for the baby (which I hope helped) and I adamently refused pitocin, doing delayed vaccine schedule... Trying my best, but I feel guilty I didn't know to do these things with my first child.

Caffeinated Autism Mom said...

Anonymous,thank you so much for your comment. I hate that I allowed myself to blindly trust our doctors without question. Now I question almost everything. I have to. It sounds like you have learned to find your powerful advocate voice, too. All we can do is the best we can with the information we have. The guilt is still there, but we just have to learn to be okay with the fact that if we had known better, we would have done better in the past. The good news is that we can do better now. I'm glad you were able to learn faster than I did and make positive changes for your second child. I didn't catch on as quickly as you did, but we are making better choices now. I wish you all the best as you continue to be a strong voice for your children's health. Good job, mama!

Carissa Cowgill said...

You are an awesome mom! It is so great the amount of time you have researched into your children's health. I applaud you!

Just so you know, the doctor who said that vaccines are the cause of autism was shown to have fudged his research and he lost his medical license. He caused worldwide panic about the use of vaccines, and it lead to parents forgoing them. As a result, children are getting many diseases that are preventable, and some are dying. One example is Pertussis. I am not saying that nobody gets reactions from vaccines, but they are not the "evil" that some people fear. In fact, they can be life savers! By the way, I work in the healthcare field.

As for Group B Strep, it definitely can cause problems. You certainly don't want your baby getting it! It is also true that the antibiotics can cause gut problems. But it is usually milder than the problems from Group B Strep. It's a catch 22!

Pictocin has been known to cause problems in some mothers as well.

Don't let anyone make you feel bad for the choices you make. And you obviously care a great deal about children, so try not to give yourself a guild trip :) You did your homework, and you are a great mom. Don't think otherwise! Kudos!

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