Erin and Sean Hickey
Louisville, Kentucky, USA
I did everything right. I took folic acid a year before conception. I cut out alcohol and caffeine a month before conception. I ate fresh fruit and vegetables, no deli meat, no high mercury fish. I walked every day. I read any book I could get my hands on. I spent hours and hours preparing his room. I did everything right. So why, three hours after delivery, was my body shaking so severely from nerves that not enough blankets or comfort or medicine could control it. Why was I saying goodbye to my newborn son through a tiny hole of the transportation isolette and only getting to touch his tiny hand? Why did I have to see my husband in the arms of a friend as they both cried? Why was my family being taken away from me? This was the day I had looked forward to my whole life. I was prepared for joy but this day was pure terror.Neonatal Alloimune Thrombocytopenia stole this day and many others from me. Finn Marin was born with a platelet count of 5000, healthy low is 150,000. He bruised immediately. His lips were blue from the bulb syringe at delivery. To this day, I hate myself for being so generous in letting my family hold him. We were passing him around and touching him, bruising him, hurting him and not even knowing it. When I finally held him, it was only for a few minutes. I was able to feed him. It was beautiful. We did perfect. I remember having that feeling of everything is going to work. We were what each other needed. It was the one normal experience I cherish from that day. Then he was gone. They needed him again because his blood tests were not accurate.
“We need to talk about your son,” Finn’s pediatrician said and then he walked into the bathroom. I had never felt that fear and desperation before. I looked at Sean, my husband, and we tried to decipher what was happening. Months later I realized our kind doctor was in the bathroom to catch his composure. He and my husband worked together. He then explained to us the symptoms that Finn had of NAIT. Although at the time, Neonatal Alloimmune Thrombocytopenia did not mean a thing to me. I was trying to understand but it did not register. I was thinking maybe it is similar to leukemia. I had never heard of anything remote to this. I was terrified.
Due to the shock and trauma, my mind is still spotty of this day. It took me months to remember the sweet moment of seeing Sean hold Finn next to my face. Sean has had to tell me what all I said to him, if he cried immediately, what he looked like when the doctor raised him up.
“Erin, why did you have a c-section?” Our pediatrician asked later that day. I remember looking around my hospital room. It was filled with people I love, my family. They were all curious to know about this decision since a few of them were skeptical of it. I told him that Sean and I prayed vigorously and felt like I was supposed to have a c-section. I had no true backing. I had done some research but nothing concrete.
“It was genius.” He remarked.
This was not my work of genius, this was God’s.
He continued to explain to us that the pressure of a traditional birth would have been detrimental to the bleeding in Finn’s brain. He most likely would have died.
Finn and Sean were flown 250 miles away from me to Kosair Children’s Hospital in Louisville, Kentucky. My two loves in life were ripped from me. I knew I had to be with them. The incredible woman, my OBGYN, who shared my faith in God and prayer would once again assist in saving Finn’s life. When I told her my reasoning in wanting a c-section, she had no doubts just as when I told her my reasoning in wanting to leave the hospital ten hours after surgery. Normal stay is three days. She could see the determination and desperation in my face. She released me contingent that my supportive family follow strict guidelines for my care. Little did we know, that the next morning I would be giving platelet donations to save Finn.
I had intuitive knowledgeable doctors who listened to me. Many families do not experience this. NAIT goes undiagnosed time after time. Our pediatrician diagnosed him within two hours.
It was a struggle with regulations to allow me to donate platelets so soon after delivery. I am so grateful for Sean’s medical knowledge and resiliency in doing what was best for our family. I remember waiting outside of Red Cross for hours in my best friend’s car. I was sore, confused and in constant prayer. Eventually the process got easier. I would donate platelets at Red Cross, they were processed and then Finn would receive them. My platelets would keep him stable for 5 days and then we would start the process again. Every morning, his doctors reported to us and each morning we were hopeful for a stabilized platelet count. We would not hear those words for five weeks. Treatment continued.
I would put my face on his and hum, or tell him about his doggies at home waiting for him. I would talk to him about our huge family and his Papa Rod’s sailboat that we would take him on. I would do anything to comfort him as they poked his little delicate body and head with needles for new IVs. I wanted to give anything and everything to make it stop. Make it all be over with. I felt guilty that my body, my antibodies were attacking this gorgeous little boy and he could not fight back. He was tiny.When the good news finally came five weeks later, it was immense relief, but as I have come to know, with NAIT, there never is complete relief. I had my faith in God. I prayed that he healed his head and that these bleeds would not affect him later in life. Sometimes your worries are overpowering though. There were nights I would run into his room because I would worry he would be having a seizure or if he held a fist, I would unfold it, worrying about signs of cerebral palsy. I did physical therapy with him constantly. I would check off developmental milestones with complete delight! I kept my worries mostly to myself. I did not want NAIT affecting my family anymore than it had. I remember feeling the pain of my family when they told me about the day of his diagnosis. My sweet sister-in-law and brother were driving when a family member who was a doctor told them that they would probably let Finn die if he had bleeding in his brain. She said they could not drive through the tears. My sister took off work to do anything and everything she could. My parents traveled with me. It took over my whole family’s life. That is why I kept quiet after Finn’s four month check up when doctors thought he showed signs of cerebral palsy. My husband thought it was an inaccurate assessment. It was still scary. I kept praying and kept my faith that God healed his little head a long time ago. That is a sentence I affirm myself with often. I continued the physical therapy and two months later, they thought he had improved. I did not want to impose this sadness, this “rare” disease on anyone. Today, almost two years later, I feel the opposite. I want everyone to know about NAIT so they do not have to become aware in the same conditions my family did. I can’t ignore what NAIT has done to so many beautiful children and what it will do to others if we are not aware of it’s danger. Each time I read a story of a NAIT survivor, it flies me back into the NICU. I feel the worry, fear and uncertainty I did with Finn. When I read the good news, the strength and love that other NAIT families have, I get to share and rejoice with them. Finn has been nothing but good news. He is a miracle. His neonatal team says he is advanced developmentally. They do not know why he does not need the portions of his brain to function but he has proved it true. He has had many scans and MRIs and they produce no worries. He is just a normal kid now. He loves his two Boxer dogs that we told him about so many times in the NICU. He looks for the moon every night. His favorite place to be is in water. He is the kindest, gentlest kid I have met. He kisses me as much as I kiss him. I am always grateful for him. I am always grateful to God for the guidance that lead to his survival. I used to wonder why God chose me to witness such a miracle. Now I know, it is to save other families from this disease. He knew I would not stand by and let NAIT steal moments, days and lives from unknowing families. Please do not let the suffering that NAIT children have endured have no purpose. Acknowledge this disease.