You Have a Very Sick Baby

No one in the room said anything. When they handed Dillon to the pediatrician, it only took a few seconds for me to realize that something wasn't quite right. The obstetrical nurse was doing her job in a very businesslike manner, the doctor was busy sewing up several lacerations, and my mother was watching and waiting. Since everyone had a better view of the whole thing than I did, they all knew long before me that something was wrong.

I don't recall one person looking me in the eye when I asked what was the matter. The pediatrician had Dillon incubated (meaning they inserted a tube down his throat so they could breathe for him) within 30 seconds and announced that they were taking him to the Special Care Nursery, and that whole entourage left the room. Still, no one was saying anything. The Doctor finished sewing me up and left the room. The nurse was still attending to the business of cleaning up, while I, on the other hand, was becoming hysterical. Just as I sent my mother from the room with instructions to find out what was going on, the doctors came in to tell me, “You have a very sick baby.

A very sick baby. What does that mean? Not one person, including the transport team when they arrived, would define for me what “very sick” meant. They just kept saying over and over that my child was very sick and could I just please sign all this paperwork.

I demanded to see my child before they left. They took me to see Dillon he was in a incubator, hooked up to wires and tubes, took a picture of him for me, let me touch his hand for a few seconds, and then he was gone. Just like that. And I'm left thinking, “What just happened here?” It's like being caught in a hurricane when you were expecting a gentle spring rain. There's so much going on all at once, everything is moving so fast, you're being hit from every direction and clearly, you're ill prepared. Then all of a sudden there's nothing. For a moment in time there's just nothing, as though passing through the eye of the storm. And then...you get to the other side.

In the meantime, I found myself on the brink of hysteria with the need to get out of the labor and delivery room. I didn't want any phone calls or visitors because I knew I couldn't handle it emotionally. When my mother asked what she could do, without hesitation I asked her if she could call everyone and tell them. Looking back, I realize how heart-wrenching it was for her to do that. I could not see at the time that she was dealing with her own shock and grief....grief that this happened to her grandson and more grief that it was happening to her daughter, her baby. What a double-edged sword it was and I'm even now sorry for it but grateful as well.

I got to the other side of this hurricane several hours later when I called the Neonatal Intensive Care Unit (NICU) and spoke with the neurologist in charge of my son's care. He seemed surprised that I didn't know what was going on and that I had only been told that my child was very sick. He went on to explain that Dillon's brain was swollen, that he was having seizures that they hadn't gotten under control yet, that his EEG to measure brain wave activity was pretty grim. “The picture is very grave”, he said. The list of things that were wrong with my child were not in the realm of things I had imagined since they took him from me with “your child is very sick”. It never occurred to me before then that “very sick” meant a catastrophic tragedy.

When I left, it was empty-handed. I didn't look at anyone. I likely would have collapsed had I seen a happy family leaving with their newborn baby. It would be many months later and after I developed the courage to read the medical records that I would see what I could not have seen when THE EVENT was unfolding..

What I learned was that the tragedy of my son's birth could have been prevented had a Cesarean section been done 60-90 minutes earlier. It was hard to get around that startling fact.

So now, in addition to this unspeakable grief, I also had the added burden of a double dose of anger. The grief stayed with me for the first few years, but it took a few years more to shake the anger.

When Dillon was five years old, I realized that it was time to let it go. I did not do it because I forgave the doctors for making me the parent of a child with special needs. I did it because it was a heavy load to keep carrying around and I knew that it was making me less effective as a parent and as an advocate for my son. More than that, though, I needed to do it for me because I felt like it was the one thing that was holding me back from moving on.

It didn't happen overnight, but it did happen. Once my vision was no longer clouded by anger, regret, or sorrow, I could clearly see all the things that this precious child of my heart had taught me... about life, about love, about strength, and most of all about courage.

As life has moved forward for my son and I we have got past it. And it is a way of life. Learn to love it you can not changed it. Love you life your child and the family and support you have around you, learn to network and always ask for help.