Intense Guilt

When I worked at Make-A-Wish Foundation, I would frequently meet with parents of children with life-threatening illnesses. I can't tell you how many times I was shocked and amazed by the strength of the children and their parents. Some of them, despite having a glimmer of hope, knew that their children wouldn't be with them much longer.

Parents often blame themselves for their children's mistakes. They believe they could have done something. They also blame themselves for their children's health and well-being. I remember looking into the face of one mother who was racked with guilt because she couldn't explain why this was all happening to her child. The doctor's couldn't provide her with an answer, so it must be something she had done. She carried her child in her womb while it was developing, so obviously something went wrong along the way and it was related to her. At the time, I couldn't quite understand why she would feel this way. It's just a fluke in genetics. You can't blame yourself.

But now I do.

Our youngest daughter, Josie, was born with a few difficulties of her own. She was a scheduled c-section. When she was born, they held her over the curtain for me to see. Such a sweet, quite chubby little baby. All the doctors said she looked "healthy" because of her size. I heard her first little cry and boy, was she angry. To this day, you still don't wake that baby up from a nap until she's ready.

They took her to the warmer to be cleaned up. Then her little cries changed. Then they turned to little whimpers. I heard some scuffling around me. Bill was with her so I called out and asked if everything was okay. Everyone kept assuring me it was, but I knew from their voices that something was wrong. I kept asking. Even Bill, not wanting to worry me, said that everything was alright. After a few minutes they brought her over to me, swaddled, and let me look at her for a few seconds. Then the nurse assured me again that everything was okay, but that they needed to have a closer look at her because she was having a little trouble breathing. Nothing to worry about. And I didn't worry much because Maddie had been born with a little muconium and had had a little trouble clearing her lungs at first.

About 30 minutes pass while they stitch me back up. Bill and I had agreed (with both Maddie and Josie) that he was to stay with the baby. He needn't stay with me. So I assumed he was with Josie. They wheeled me into the post-natal room for awhile until the anesthesia could wear off. Bill met me there, but Josie wasn't with him. The nurse with him explained that she needed a little more attention so they were taking her up to the NICU for awhile. And there I am, in a room of about 10 women who had just given birth, all of them holding their babies. And my arms were empty. I wanted to cry, and I remember being so scared. All I wanted to do was get to my room so I could then go see Josie and find out what was happening. Eventually, they wheeled me to my new room and I got settled in.

It's almost two hours after her birth and I still haven't held my new baby.

Bill spent the next hour or so trying to find out what was happening and somehow found a way to report it all back to me. At first he couldn't find her. Eventually he found her, but he wasn't allowed to touch or hold her. She was in a NICU "holding" room, where she was being evaluated before they officially admitted her into the NICU. She had been having trouble breathing. She couldn't seem to do it on her own, without support from the nurses. Bill went to the viewing area of that examination area and took pictures of her with our digital camera, so he could show me later.

I spent all afternoon and evening waiting to hear more news. I had to call all of our family and friends to announce the birth. I also had to tell them that I hadn't seen her since and that she wasn't doing so well.

Finally, at around midnight, they told Bill and I that she had been moved to another NICU holding area, but one that allowed us to visit her. More than 14 hours after she was born, I finally got to hold my baby.

Over the next 4 days, i spent as much time as I could in the NICU with Josie. Still recovering from the c-section, I had to slowly inch my way there, but it was worth it to actually hold her. The problem with her breathing had changed. She was now able to breathe on her own, but stopped when she was eating. She was on a feeding tube for a while. Her respiration was monitored constantly. Sometimes Bill or I would hold her a certain way and her oxygen levels would fall. We'd have to quickly change our posture to help her breathe well again (it later turned out that the pulse ox attached to her toe kept falling off. No one told us and prevented any of the short heart attacks we kept having.) Tests confirmed that she had a small leak, or fistula, in her esophagus and trachea. Basically, her food sometimes went straight to her lungs (and vice versa in that her breathing would create horrible gas in her stomach). We fed her little bottles of thickened formula, thick enough that it wouldn't pass through the little leak.

Two days after she was born, I was allowed to try and breastfeed Josie. I held her to my breast and she latched on and did amazingly well. I couldn't believe it. I'd had such a learning curve when I was trying to breastfeed Maddie and it was no problem with Josie. It was the best feeling in the world breastfeeding her. I know that sounds weird, especially to those who don't have kids, but it's not sexual in any way. I was finally able to hold my baby and actually feed her and be her mother, instead of just the woman visiting her a couple of times a day. She did well that day and we thought that she might be going home soon if everything kept getting better at that rate.

The next morning, I went down to the NICU to feed Josie. My milk had come in overnight (as opposed to the collostrum or "premilk" the night before) and I couldn't wait to feed her and hold her again. I held her to my chest, she latched on perfectly, and immediately turned blue and stopped breathing. The monitors went off like crazy and the nurses had to quickly grab her and revive her. I sat there and -- to this day-- cannot describe the emotions I was feeling. Panic. Numbness. Worry. And...guilt. I had nearly asphyxiated my own baby by feeding her.

There were so many things afterwards that added to the guilt: I was discharged from the hospital and sent home while Josie had to stay behind. Later, when I was able to pump my breastmilik and add a thickening agent (so it would go past the fistula) we discovered that Josie was allergic to something I was eating and would scream in pain after every feeding. The heart monitor I carried around, attached to her for almost 3 months, was a constant reminder as well.

And I understood what that mother had been feeling. I finally felt the intense guilt one feels when you can only blame yourself for something hurting your child - because you have no answers. And you need answers. And since you don't have a faith to fall back on, you have to rely on science. And in your mind, the scientific facts point directly back at you.

And I still have those pangs of guilt. I had had two glasses of wine when I was pregnant with Josie (the doctor had actually recommended it to calm the Braxton Hicks contractions that had started in my 6th month). Was that exact day the one when her trachea had been developing? I cheated and ate deli meat now and then. Did that contribute to her many allergies? I dyed my hair (not bleach, just dye). Did that cause her eczema? I could sit here and analyze every exact thing I did during Josie's pregnancy and I still won't be able to absolve myself from any guilt in her health problems today.

Hopefully, that guilt will lessen over time. Especially if she grows out of some of the problems she has right now. And maybe instead of being the one who caused those problems, I'll be the one who helps make them go away.