I’ve written this blog entry about a dozen times in about a dozen different ways, and it still doesn’t seem right to me. Writing about Ethan has always been emotionally draining, but for you to understand who I am and how I got here, I have to talk about my son.
Never in my wildest dreams would I have ever thought I would be on HemAware’s Web site writing about my son. And I most certainly never thought I would be writing about my son because he passed away. I’ve been writing about my grief since Ethan died, but this feels different to me. I’m sharing my soul with people who weren’t there to hold me as I broke down, to witness my son’s beautiful burial and to see how our family has lived since Ethan took his last breath. However, I feel it’s important to talk about my son not to depress, but to heal.
Heal who? Well, me, and hopefully any other parent who has lost a child the way I lost mine. I felt so utterly alone when Ethan passed away. The subject doesn’t get brought up as often as it should but, then again, who wants to talk about depressing stuff, anyway? I had seven days with Ethan. I remember those days well. I could go on and on about each and every moment that led up to Ethan’s death, but that story would take more time and words than my weary soul is ready to write in one sitting. Piecemeal will have to do for now.
Ethan was born on February 20, 2008. He had a clean bill of health with the exception of a mild case of chordee (bending of the penis) and hypospadia (an anomaly of the urethra) that required a special circumcision to be performed by a urologist. If he had been circumcised before we took him home, we would have known sooner that he had a bleeding disorder. It’s strange to think how a simple circumcision could have potentially saved his life.
For the next three days, John and I blissfully enjoyed the pandemonium of having three boys at home. Ethan was a beautiful baby. He was content snuggling in any willing person’s arms—even the arms of his squirrelly big brothers. There was something unique about his spirit, though I couldn’t quite figure it out. I was wrong in thinking I would have a whole lifetime to figure Ethan out. There were some oddities that materialized over the course of the next few days that I now know were minuscule signs of his bleeding disorder. I blame myself for my lack of foresight.
The day he was born, he had one episode of chocolate-milk-like spit-up. I called the nurse in the room to show it to her, but she discounted it as residual amniotic fluid. I believed her at the time, but I now know that could have been a minor gastrointestinal bleed. He even had a small speck of blood on his pacifier. The day Ethan came home from the hospital, I took off the bandage where his foot was pricked for blood work and noticed the bandage was soaked bright red with blood. The two heel sticks were within millimeters of one another, so I thought nothing more of it. Ironically, as I held the bloody Band-Aid, I told John the blood “could mean he has hemophilia or something.” The bleeding seemed to come and go over the next few days, but I honestly believed it was because of the close proximity of the pricks. Ethan also had developed two tiny red specks (petechiae), one on each side of his nose, from crying.
I mentioned Ethan’s minor oddities to the doctor at his two-day–old well-baby visit, but the pediatrician didn’t think anything of them, either. We mainly focused on Ethan’s chordee, hypospadia and slight jaundice instead. Now I wish I wasn’t so worried about his penis during that visit. Vanity took over, and I ignorantly allowed myself to attribute the minor signs of his bleeding disorder to Ethan being a quirky newborn. All I could think about was his circumcision and what people would say about him.
The appointment was the day before his head bleed. I thought everything was copacetic once the referral was sent to the pediatric urologist. It was a Friday afternoon, and I left the doctor’s office looking forward to spending the entire weekend enjoying my new baby. My dream weekend never happened. Less than 48 hours later, Ethan was on a ventilator in the NICU fighting for his life.
Even though I know no one was to blame for Ethan’s death, I still blame myself. In Ethan’s case, my ignorance did not turn out to be bliss.
Read more about Tiffany's life at The Art of Lion Taming.