by Rocco DeFrisco
“Can we trach her tomorrow?”
That question startled all the doctors in the room. Usually, the team of doctors who sit you down, intent on giving your child a tracheostomy, are geared up for a tough sell if not a fight. That was not the case for us. A buddy of mine said the hardest thing about the trach is seeing your kid that way for the first time. For my wife and me, as bad as it was, there was also a large sense of relief. She would be safer.
Deep down in our hearts, we were prepared for it. Our daughter had many medical complications. Breathing issues was one of them. The ENT said it was central apnea, while other doctors said it was intermittent vocal cord paralysis. Either way, she needed assistance.
No one really wants his or her child to get a tracheostomy, including us. However, each case is different. Our daughter dictated it was necessary. We could not continue to watch her code, turn blue, and remain oxygen-starved any longer. We did our research—no smokers, pets, beaches or pools. We were crushed and heartbroken (and it added to the list of complications she faced), but knew our little girl needed a stable airway.
It was never about how hard it would be on us, her parents, although it was scary. We knew it would complicate yet enhance the rest of her life as well as ours. We knew she would miss out on many things and have a different life path, but she would still be able to enjoy many things. We knew the life we had ahead of us would be the pits compared to “normal” families or what we envisioned our family would be like. We knew that having a trach meant she might not be able to talk, and we would not be able to hear our little girl cry. It broke our hearts, and there were no shortage of tears from it.
But what wouldn’t you do for your child? Having a stable and working airway grew more critical as the weeks passed. We’d walk in to the NICU and see her intubated or on oxygen, hear reports that she spelled again, or be there as she was coding. It became too much to bear. It was killing her…and us. The tracheostomy, born out of necessity, could not happen quickly enough.
The surgery was a success. And we finally saw an alert baby who was no longer oxygen-starved, but rather bright-eyed and looking invigorated (the narcotics could have helped with that, but we took it). We also knew to never lose hope that she could outgrow some of her challenges and be trach free.
Now, came the relatively overwhelming part of learning trach care. She was not going to live in the NICU forever. Conceptually, it was very weird to see a pea-sized hole in your child’s throat, which took the place of her mouth and nose for breathing. It increased the importance that we had to be as good if not better than the nurses at changing her trach.
We started with sweaty shaky hands, and over a short amount of time honed our skills and became very good at it. It became second nature and very quick. I remember people looking at us funny when we were asked how hard trach care is for a baby. “Easy.” Humor helped. I remember saying it was a good thing our cell phone company had unlimited texting so our daughter could use it to talk to us.
Like any other part of parenting, you’ll do what is necessary for your child’s well-being and safety. My wife and I both felt that if/when she codes at home and it was her time to leave this earth, it would not be because we were inept at changing her trach. We were taught well, and did have some years taken off our life when she did code at home (and in the NICU). But we handled it, along with the mucus plugs, extra 2×2 gauze during a cold, knowing the sound of the air leak, fungal rashes versus regular skin irritations.
Any code would have a long stress factor afterward, as we would wind down the rest of the day or night. We knew our little girl was always one breath from moving on to the next life, so all the breathing spells took its toll on us mentally. We also knew that we kept her with us a little longer because the artificial airway allowed us to save her life on multiple occasions.
Don’t get me wrong, having a child with a trach is not ideal, great, or what you asked for. It is a hardship for a family—but it is NOT the end of the world. It is hard, but not undoable. You adapt, just as your child does with his or her new airway.
Maybe my wife and I were in the minority asking the doctors for a trach once she proved she needed it. Maybe it was the fact that breathing wasn’t the only thing we had to worry about, so a tracheostomy did enhance her life. Maybe it was selfishness on our part, needing that stable airway to delay the natural order of things. We looked at it as a no brainer: if our daughter did not get a tracheostomy, she would die. But that no brainer did not mean we didn’t cry for the challenges and hardships that lay ahead, not only for my family as a whole, but each of us individually as well. We just kept repeating our mantra, “Not going forward is not an option.”