One of the things that makes anorectal malformations complicated is that every situation is different. There is no one size fits all solution for people living with incontinence and bowel motility issues. There are so many options, pharmaceutical, surgical, and dietary, and it takes trial and error before a bowel management strategy is found that even comes close to working well. Unfortunately, during those trial and error weeks, months, or years, there are a lot of parents and children left in a terrible in between state full of frustration, despair, shame, and pain.
I wrote this in the fall of 2010, when nothing seemed to be working for Theo and I was nearly overwhelmed by the weight of it. This is highly personal, but I think a lot of parents out there will be able to relate:
"causing pain: why I hate being my child’s nurse
I have to do it, don’t I? It’s all for him, I would never force myself to do it otherwise. I wouldn’t have the strength. But when you pin his limbs down to keep him from getting away, while he screams and begs you with phrases like “Mommy, I want to stay broken. I don’t want to be fixed”, how can you help but feel like a monster? Will he ever trust me? I feel like there is no amount of love that can make up for all the times when I must force pain on him against his will. A mother should be a haven and an escape from the pain of the world, never the one who inflicts it. Sometimes I wonder how he is different from a child whose parents beat him. He doesn’t understand why we would inflict painful and seemly cruel acts upon him time and time again. He doesn’t know how much we suffer seeing him scared, helpless, and in pain. How can he grow to be a trusting and gentle person with all of this pain from those who love him the most? I am so discouraged."
Right before Theo's third birthday we decided that he should get a Chait cecostomy. Getting this procedure done was a leap of faith for us. We had no idea if the surgery would work well for him and the cost in pain and trauma for Theo was huge. However, after two months it became apparent that it had been the right choice. For the first time ever he was able to wear underwear and go swimming without fear. He no longer suffered from cramping or constipation and most importantly, screaming, crying, and pleading became a rarity in our household. I can't overstate how much his cecostomy has changed our lives for the better.
|showing off his shiny new button after its|
|First day of school|
The first big question for us was whether or not we should have more children. There is no clear and easy answer with VACTERL association. Most studies show that it is not genetic and only in very rare cases can two individuals with these malformations be found in the same family. Theo also had extensive genetic testing in the past which showed that all of his chromosomes were normal. But even still, the thought of going through it again was daunting. Thanks to the people at the VACTERL study at the NIH we were able to feel more confident that our chances of having another child with the same health issues was extremely low and that we shouldn't let this fear get in the way of our future.
|Theo loves his little sidekicks.|
Another risk we took was deciding to move to Japan. We had very little idea what the medical system was like, how we would translate his documents, and how we would swing it if he needed another surgery. It was especially scary when Theo landed himself in the hospital only a few weeks before our big move. This was a dream that we had though, and we decided not to let fear of the unknown define who we are. We don't want him to hold himself back on account of his differences and what better way to model that for him than through our choices. Thankfully this also worked out for us and has been a wonderful experience for our whole family.
We really have no idea what the future holds. I often worry if Theo's will develop emotional or self esteem issues. The first few years of his life were so completely focused on restoring his physical wellbeing but we are entering a new phase where his psychological well being is at the center. I never want him to feel ashamed or secretive about who he is, but with such a stigma around anorectal malformations it will be difficult.
Hopefully someday soon he can connect with others who are also living with a similar condition. Inevitably he will want to pull away from me and gain his independence but it would be great if he could find someone to be honest and real with.