IT HAPPENED TO ME: My Nurse Judged Me For Getting Pregnant In Spite Of My Autoimmune Disease

Should children only be born of the disease-free, the completely healthy?
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Publish date:
October 31, 2014
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pregnancy, family, nurses, autoimmune disease, Sjogren's Syndrome

I was staring at the whiteboard with the new nurse's name, Claire, and listening to the contraction and infant heart monitors. On a prolonged bed rest due to early contractions and my baby's scary heart dips, I was obviously worried -- and not prepared for the first question that the nurse would ask me.

“So you knew you had Sjogren's Sydrome, this autoimmune disease, and you got pregnant a second time anyway?” she said with a blank face while adjusting the wires attached to me.

I was caught off guard.

Yes, I had one other daughter two years before, and then found out I had a sometimes-debilitating autoimmune disease that can cause fatigue, pain, and sun sensitivity. (It's the same disease that tennis superstar Venus Williams struggles with.) But after consulting with my doctors, and learning the risks, which were minimal, my husband and I decided to try for a second baby.

I never believed a stranger would dare judge me, out loud.

“Yes,” I mustered, concentrating on not crying.

I was in pain at the time, with contractions that had not ceased since my 22nd week of pregnancy. I had been in the hospital for several weeks, and did not know that I would be there for a total of three months.

After my sadness, I got angry and righteous. Who was this lady, anyway?

There is guilt associated with having a child when you have a disease, for all women and men. But it comes down to the essential question of whose right it is to decide who has children. Should children only be born of the disease-free, the completely healthy, mentally and physically, to the parents of a man and woman, of a certain race, of a certain disposition and financial status?

I had never expected to be confronted with my own guilt by a stranger, to be forced to look at my own right to have a child. It is something I think about when I see people denied the right to have a child, or to not have a child.

I am willing to love my children, and raise them to the best of my ability, sacrificing what I need to, learning as I go to adjust to their needs, and always taking care of my self so I can do that. And my husband is prepared to do the same, adjusting his own lifestyle when I am sick to take on more weight. It is our decision, not anyone else's. And I think everyone should have the same right as me, too: to make that decision on their own.

Of course, my family and friends worry about me, especially when they have seen me sick, puffy-faced from steroids and forty pounds overweight from being unable to move much. But I know what my body is capable of, and simply put, that is a lot. I am willing to confront the risks and pain I have to go through.

I am now pregnant with my third child, and I have just been put on a suggested bed rest due to, yet again, preterm contractions. But I am ready for the questions, this time around, when confronted with the intrusive, judgmental questions. Why, yes, I knew I had a disease before getting pregnant, and yes, I think I am perfectly capable and ready to have a healthy child.

I have known the struggle of sickness, and I pray that my children don't have to face it. Although my children have the risk of also having Sjogren's Syndrome, the likelihood of having it is unknown. And because I have a certain blood marker, called SS-B, there is a slight risk every time I am pregnant of my baby being born with heart block, a congenital heart problem; also, there is the very scary risk of stillbirth. But I want to chance it, to put all of my hope in the possibility of life.

Because I can, and I want to, and am willing to put the work into it to be a great mother, whatever that means. I know what's it like to be very sick, and to come back to life, almost literally, mentally and physically. I want to be able to offer children the chance to enjoy kite-flying, sliding on their scooters down the street, playing hopscotch and running in the sprinklers -- even if one of us is not in perfect health.

And I think that's OK, despite naysayers and the worrywarts.