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To the Mom Who's Feeling Guilt Over Her Child's Rare Disorder

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I had come into the hospital that morning for a MRI to make sure everything would be in order for my delivery a month from then. The MRI, however, never happened due to being whisked away for an emergency cesarean section. Apparently the doctors had sensed something was wrong with the baby. The surgery seemed to be a success and I heard my daughter’s first cry, but moments later I saw a team of doctors and nurses run into the room, and the room became a cloudy haze to me.

I looked to my husband Salem and the look on his face was grim and exhausted. What did I miss? “Salem, what happened? Is the baby OK?” were I believe my first words to my husband when I came out of my haze in the recovery area, just in time to meet Dr. Ross from the trauma team. “Doctor, is she OK? What’s going on?” We were than informed that our daughter Karis was only born with 7 percent of her needed blood. She’d had a stroke moments after birth and had died, but Dr. Ross and her team were able to revive her. She needed a lot of blood and she was in a fight for her life. I signed the papers for approval to every test they needed to do and for the blood transfusion. Guilt started to creep in.

“We are trying to cross everything off of the list, but there is a very rare disorder that seems to fit. We will first try and rule out everything we can. It could end up being something simple.” If “simple” was there we never found it. Karis was later diagnosed with placental mesenchymal dysplasia associated with hepatic mesenchymal hamartoma (PMD with HMH).  Hearing that there is not much information about this disorder did not help the guilt I felt inside. “Maybe if I had eaten more plant-based products or red meats…maybe if I…” The cycle was constant. I had felt that my body had failed her. It stole almost everything from her and it was supposed to be my job to protect her. I was angry and scared but refused to let it show because she needed me.

By the time she was 3 months old, she had five doctors from different fields caring for her through outpatient services. From developmental, to liver specialists, to blood specialists, all the way to her regular pediatrician. My life was filled with hours of driving to and from appointments. With every ultrasound, blood draw and MRI, the guilt was there, just below the surface. I was filled with love and heartbroken at the same time, but each time I reminded myself of something a doctor told me.

Even now, years later, I can hear the last thing he said when we were about to leave the hospital for the first time: “Salem, your job is this: Look at your wife and remind her as often as you can that this is not her fault. She may not be saying anything about it but it is how she is feeling. And Danielle, it’s only natural to try and take blame for this because you are who carried her into this world, but it really isn’t your fault. Don’t hold her back, don’t treat her like something is wrong. A child’s brain is amazing and can reroute itself in amazing ways. If you let can let go of how you are feeling and can use that energy to give her any sort of learning tool, she will be just fine.” It was not easy but I have done my best to listen.

hand holding newborn baby hand in hospital
Danielle holding Karis’ hand.

Those words remind me throughout this journey to just go with the waves of life. If you fight them they will only tire you, but if you go with them they will bring you to places you never thought possible. So to the moms out there who have a child that needs just a bit more care than the rest: It is not your fault, just as it is not my fault that my daughter has PMD with HMH. It is our job to give them the best chances in life and in doing so we have to let them live the life that was set out for them, not the one defined by a disorder.

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Originally published: March 26, 2016
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