He Needs a What?

Once I put my foot down and decided that I had had it with the "wait and see" approach, life for us began moving at a frantic pace.

One Sunday evening, the head of the NICU practice was the doctor on rotation, and he talked briefly with my husband and me about what our options were most likely going to be after the pulmonologist made his examination. With Pierre Robin, several treatment options were availble. First, there was the "wait and see" method that we were already trying. Second, there was something called a "tongue-lip adhesion" we could try, where a plastic surgeon would literally sew Michael's tongue to his lower lip to try to keep it out of his airway. Third, the doctor thought we might be able to attempt something called a "neonatal jaw distraction" where surgeons would insert devices that would stretch Michael's jaw and pull his tongue out of the way that way. One last option was a tracheostomy, where they would cut a hole in his neck and let him breathe through a tube for awhile. But, the doctor said, he didn't think the chances of the pulmonologist would recommend a tracheostomy because the doctors thought they "saw cord" on the day Michael was born, and tracheostomies were not the first option when the child was intubatable.

Okay.

I can deal with this. A little surgery, some recovery, and moving on. My husband was still pretty much in shock, but I was no stranger to hospitals and surgery. A surgical fix to put an end to this endless waiting ... I could handle that. Of course, no one wants to put a newborn through any kind of surgery, but if it got him home with us ... I could deal with it.

On Monday, the pulmonologist asked me for a meeting. Dr. 'S' came by and said that he wanted to sit down with me as soon as possible. Of course, it was daytime, and I was at the hospital without my husband. My inlaws were with me, but as far as parent decision-makers, I was standing alone in the bulls eye. After the weekend update from the NICU staff, I thought I was prepared. "Sure," I said to Dr. 'S'. "I'm okay with anything so long as he doesn't say he wants to put a trach in my kid."

"Mrs. K___, the doctor does want Michael to have a tracheostomy," he answered.

At that moment, I grabbed onto Michael's crib and hung on for dear life. I was standing in the middle of a very crowded NICU, with at least 15 babies, and their nurses, and some parents, all standing around with machines whirring and monitors beeping, and yet, the room went strangely silent to me. I felt somehow like a white cloud descended around me. My heart seemed to stop, and a cold feeling went through my body, starting at the back of my neck and enveloping me entirely. I thought if I so much as let go of Michael's crib, I might fall over. I wanted nothing more than to drop down on the floor, in the middle of that crowded NICU, and stop moving.

A tracheostomy. They wanted to cut a hole in my kid's neck and shove a tube in. He wouldn't be able to talk or cry to me anymore. This ... this was more than I could handle. I was mentally and physically overwhelmed by the concept. At that moment, if I had been given an honest option of giving the child back to the unborn world he came from and move on alone, I would probably have agreed. I was so devastated and shocked at the turn our life was taking, and I was desperately afraid that THIS was beyond my ability to handle. I thought we had found the line beyond which I could no longer cope.

The doctor said, "I wanted to come over and tell you myself so you could get used the idea and prepare yourself." I remember vaguely that he asked me if I was all right. I remember taking a few deep breaths, never letting go of that crib for one second, never looking at anything but the floor, and I remember saying, "I need a minute." He squeezed my arm again and told me the doctor wanted to see me right away, but I should take a few moments to get a hold of myself. I remember whispering to myself inside my head that I was this child's mother. If I didn't step up to help him, who would? For better or for worse, this was my job, and there was no turning around.

I could draw this story out for pages, talking about what happened when we talked to each of the doctors, what we said, what they said, and how we struggled with the information and what to do, and how we tried to put a plan together with the help of my family, the pulmonologist, and a pretty incredible cleft palate surgeon. I don't know that rehashing these details are really all that helpful, or even that interesting, but I am open to any questions anyone might have.

Instead, I will just limit my comments to a few things I wish I knew during that time. First, my child had a structural problem, not a respiratory system problem. A pulmonologist should never have made the final determination about whether my child needed a tracheostomy. We should have had an ENT consulting, because ENTs deal with structural problems.

Second, the pulmonologist also recommended that Michael receive a gastrostomy tube for his feedings because "children with cleft palates often have eating trouble." This statement is true. I also believe that there was a lot of merit to having the Gtube placed while Michael was already under for his tracheostomy. What I didn't know then and do know now is that a pulmonologist should never have made the determination that my son needed a GI surgery without consulting with a GI doctor.

Third, our pulmonologist dismissed all the other options as follows: The jaw surgery doesn't work, and tongue-lip adhesion would be a waste of time, and a tracheostomy was our only option. I asked for a second opinion, and the pulmonologist told me that "Michael was not safe enough for a second opinion." Lesson number three is that I should never have let that doctor talk me out of a second opinion. Another surgeon, at another hospital, could have done a file review Michael never had to be moved, and I allowed myself to be bullied. In truth, another children's hospital about 12 miles away would have offered me an entirely different plan of action that would not have involved a trach but would have involved the jaw surgery that the other doctor had described to me.

At the end of the day, we convinced ourselves that the trach was, sadly, the best option. We had a plastic surgeon whose judgment we trusted above all, and he had quite a bit of experience with Pierre Robin. In fact, he had just recently attempted a tongue-lip adhesion surgery on another little boy whose family we would soon meet. As it turned out, the surgery was not successful for that little boy, and he ended up needing a trach as well. The plastic surgeon had little hope that the surgery would work for Michael either, and he really did not want to try it only to have it fail. He also was not comfortable with the idea of doing a jaw distraction on a child as young as Michael, himself, but he was willing to try to find us a surgeon who would do one if we wanted. By then, though, we had become convinced that as devastating as a trach seemed to us, it was the best option for Michael.

At the end of the day, as you will see much, much later in the original blog, the decision not to seek a second opinion was not a wise one. Again, we made the best decision we could with the information we had available. In hindsight, this decision was probably not the best one for Michael's individual physiology, but we had no way of figuring that out. (But, again, just because you can't possibly know what is the right answer and what is the wrong answer doesn't mean that there isn't a right and wrong answer.)

If we find ourselves in that situation again, I would never stand for a doctor telling me that a second opinion was not possible. I don't know what choice my husband and I would have made had we gone to the other hospital and met with a surgeon who was willing to do the jaw distraction. Standing where we are now, it looks like we should have tried the jaw surgery, but of course we have no way of knowing what would have happened. That path, too, comes with a host of potential complications, and who knows which one of those complications we might have encountered?

I can say that if we have another child in the same situation, we will probably try jaw distraction before consenting to a trach, but hopefully we won't ever find ourselves there. I am not saying that the trach is a bad thing itself, or that the jaw distraction is a surgery everyone should rush into if they find themselves in our situation.

What I am saying is that we consented to put a trach in Michael to give him time for his jaw to grow so he could breathe without help. In a great deal of the cases, the jaw will eventually grow out, and we were all reasonably confident that Michael's would, too. In a year, though, my husband and I would be sitting down with some of the same doctors, and some different ones, facing the very real possibility that Michael's jaw, while growing, was possibly never going to grow fast enough to get that trach out. One year later, we were facing the same decision we faced in Michael's first few weeks.

Despite our best efforts to avoid unnecessary surgery, all we did was buy time. But again, had we had the jaw surgery in that first month, no one can say what we would have faced on that path. We chose a path that did not go where we thought it would, and it seems like it was the wrong choice, but quite possibly the other path would have led us right back to the trach eventually, too. We will never know.

What I do know is that we made one very right decision during the whole process. We met other doctors in that same pulmonology group, and we selected a different one to do the follow up work after Michael was finally discharged. We needed a doctor we could talk to, and who would listen to us, not one that gave orders and expected us to follow them. I don't doubt that the pulmonologist that arranged for Michael's trach surgery really cared for doing the best thing for my child and wanted to do the follow up himself. I do doubt that he and I ever would have seen eye to eye on treatment plans.

Lesson number four: if you can't communicate with your doctors, you need to make a change.