Approaching Motherhood with RA, My Wayby Britt J Johnson Patient Expert
I have chosen never to get pregnant.
That statement seems to make mothers and doctors alike uncomfortable, like I am living in denial.
Mothers fear for my inner mother. They know the intense joy they experienced when carrying their babies, when holding them for the first time, and can't imagine life without those experiences. They want that for me.
Doctors fear that they have prescribed medications not compatible with pregnancy to a woman in her childbearing years who does not fully comprehend the decision she has made. They fear medical malpractice if I suddenly become pregnant and am forced to make a difficult choice.
What we're talking about is not my desire to be a mother or not to be a mother, which is often confused in this situation. It is my decision to not purposely create another living being out of my own broken body.
Having lived with spondylitis and rheumatoid arthritis since age seven, I know my body better than anyone else - doctors included. I know how I have had severe and unexplained bleeding with every surgery I've ever had. I know I tend to have the one percent rare complication doctors casually warn of. These rare and, as of yet, unexplained complications could mean the difference between life and death, for myself and for a potential child.
I know that I have been on many new medications that have not yet seen through a generation of patients. These medications, while life-saving to me, have not been proven long term through generations of families. While it is becoming apparent through research that safe pregnancies can be had while remaining on some autoimmune-specific medications, no one has had children on my unique cocktail of drugs throughout my lifetime.
My situation is inherently unique from anyone else's and I know that getting pregnant with my own biological children is not the right decision for me.
An attempted pregnancy for me could mean the loss of my life, or the baby's. It could mean irrevocable damage to my joints and organs that would not allow me to be the mother I want to be. I'd want to be the kind of mother who is able to share her love of meandering down a mountain trail. Who is able to share her love of cooking up a mess in the kitchen. Who is able to leave the house and be there waiting when her kids exit their school.
I want to be a mother. I want to have the same bond that I have with my own mother and family. I want to have someone to share the joys and sorrows of life with, as well as the "just because." For me, being a mother has nothing to do with pregnancy. Being a mother will mean giving another soul the best shot at life they can have. It does not matter where that soul originated from, as long as I can shelter that soul, love it and nurture it.
I knew I wanted to marry my husband without a doubt when he said, "Maybe your disease is a blessing, because there are children we can adopt that maybe wouldn't have had a home otherwise." I want to have those babies with him.
Though we feel adoption is right for us on many levels, we are not opposed to considering other options, such as surrogacy. My doctors have explained that biological children are not out of the question, that we could always safely use a surrogate. Unlike trying to carry a child on my own, I would not have to stop any of my medications, and my eggs could be safely harvested tomorrow. This is an appealing option, because I would not risk my own health and, therefore, not put in jeopardy my ability to care for the child once it was born.
While that option is frightening to me, it is something we are considering. I fear I have genes for my diseases that I might pass on, and I'm not sure I could live with myself watching my own child go through what I have been through. But we do not know what will happen to any child or person in their lifetime, biological or adopted, just as my parents could not have guessed what my health would eventually hold. Fear is not enough to keep me from giving any child a chance. After all, I think I turned out all right.
How my husband and I choose to create our family, whether through adoption or surrogacy - or even both - will ultimately be the right decision because we will make it together.
We have to respect each other's decisions in our approach to creating our personal family because, ultimately, you are the only one that can make the decision that is right for you.