This post was guest written by Dany Barrett-Santaniello.

 

The mysterious purple rash appeared on my upper right thigh about four months into my pregnancy. Here I was, forty-one and doing the seemingly improbable: I was having a baby! Previously, I had had a miscarriage while on vacation with my husband and three teenage boys, but this time the nurse had said those magic words: “I think this one’s planning on sticking around!” My elation was insatiable and I was in love with this baby, this boy, we had found out. When I showed the rash to my husband, he noted that it was beneath the skin and said it was probably hormone-related. I was incredibly tired (hey, pregnant lady in her forties, what do you expect?), my body hurt and the pregnancy began to get very arduous. I reminded myself that I was twenty-seven when I had my first child, so hey, forties and pregnant, suck it up! Nothing seemed to be out of place : swollen joints, but regular blood pressure, normal heartbeats at check ups, my boy was growing strong!  

During the sixth month of my pregnancy, on a night when my husband was traveling, I felt an internal tug, a feeling that woke me out of a comatose-type of sleep. The pain was so intense that I could not sit up and it traveled down my right leg. After regaining my breath and bearings, I called my obgyn and received the news that as long as there was no spotting (Thank you, God, no spotting!), it was probably leg pains and I should rest tomorrow. I called into work and rested. The next day, my husband returned home. I had spent the day resting and was ready to return to work as an eighth grade English teacher. I hadn’t felt the baby move, but I tried not to be too concerned. That boy had to sleep sometime, right? Right?!

The next morning, I started to feel pains deep in my womb as if the baby were pushing against my cervix. I went to work and was talking to a colleague when the pain became so bad that I had to brace myself against the door frame. He asked me if I was ok, and I assured him that I was. During the last period of the day, I was giving instructions to my students when I was overcome with what I realized were labor pains. I called the main office and they had a teacher cover the end of my class while I called my doctor and began the hour drive to the office. I started to intuitively breathe in short bursts and drive. I have no idea how I drove, but I called my doctor and said I was on my way and in labor. They assured me it was probably a UTI and not to panic. Then I called my twin sister who was very excited. After all, the baby was big enough to survive outside the womb. I told her I would keep her posted.

When I arrived at the doctor’s office, they knew I was in pain. I could not sit and they took me in right away. When I got up on the table, they attempted to find a heartbeat and had difficulty. They did an internal and realized I was fully dilated. The nurse told me to call my husband and tell him the baby was coming now.  While waiting for the ambulance, she performed an ultrasound which confirmed my worst fear: my baby was dead.  She told me “You’re going to have to birth this little one. You are still his mother and we will help you.” Even though she didn’t have to, the doctor guided me through a full labor in the ambulance and as the ambulance pulled in, my husband was there waiting. I burst into tears when I saw the emergency staff lining the halls with looks of sympathy on their faces. They knew what I was about to do and their empathy and respect for us and our baby overwhelmed me.

I labored in the maternity ward, receiving an epidural and having several vials of blood drawn between the frequent contractions. When he finally came, my beautiful baby boy weighed only two pounds, but was fully formed right down to his beautiful black curls and eyelashes.  The placenta was delivered separately and was the size and consistency of a hockey puck. My baby had not been receiving nourishment. We held him and the nurses took his picture, filled out a birth certificate with all of his stats, inked his tiny footprints and treated him like all of the other babies, except we knew he wasn’t coming home with us. We held him and loved him and said goodbye to our sweet Silvio.

The doctor consulted with me and preliminarily diagnosed me with Lupus (SLE). I showed her my rash , which was atypical and discussed my symptoms on her checklist , which all could have been explained away with a late-in-life pregnancy. When the results came back the next day, it was definitive: my body had attacked my baby and caused him to die. I was heartbroken! How could something like this really be allowed to happen? Where is the justification for this horrible loss of someone so little?

That night, alone in the hospital, I went through a myriad of emotions: self-loathing, horror, disgust, sheer heart-rending grief and also, inexplicably, relief… relief because my worst fears had happened: my baby had died and I had an incurable disease. I am enduring my worst fears and I am still here! I came to this startling realization during a middle-of-the-night call to my sister to deliver the horrid news of Silvio’s demise and my diagnosis. While sitting alone, unable to tolerate noise from the tv or light from the hallway, immersed in the most uncomfortable, difficult moment of my life, I began to be filled with gratitude…my Silvio, my sweet baby, that little generous soul had sacrificed his life to keep his mama alive. If he had not passed away, I would never have known I had lupus! I could have had severe organ damage or lost my life completely.

We never really know what twists and turns our lives will take, but I am forever grateful for the one that led me through those happy six months of living with and loving my sweet Silvio Gregor.

 

**This is the fifteenth of many in a guest contributor series. If you would like to be considered as a guest writer for ChronicBabe, visit this link.**