Today we had an appointment with a Neonatologist. I have been looking forward to this appointment for weeks with a mixture of excitement, nervousness, anxiety and various other emotions. To me this was one of our most important meetings. A what to really expect kind of meeting. I went in with a long list of questions swirling in my head.
What kind of equipment would he be hooked up to? How would that affect holding him? How would that affect my children holding him? How would that affect his Baptism which we want to have at birth? When/if he came home what should we expect/plan for regarding his care. Etc. Etc. Etc.
Those questions evaporated within about the first thirty seconds.
Our meeting started with the doctor asking me what I knew about our son's diagnosis
I told him that I know he has Trisomy 13. I know he has a bilateral cleft lip and pallet. I know he has 2 holes in his heart. (VSD) I know he has brain "abnormalities" typical of a Trisomy 13 baby. I know that babies born with Trisomy 13 typically (and when I say typically I mean pretty much always) have breathing difficulties due to Apnea. I also know that there is a very low survival rate.
He asked me what I was expecting.
I told him that while I am very aware that the survival rate is low and the chances of being able even do anything to save or extend his life were slim, I wanted to do everything in our power if the opportunity presented itself.
I was met with a blank stare.
Then he basically told us that they don't really do any kind
of intervention with a Trisomy 13 baby.
I'll be honest, I was a bit fearful of that response
. I did worry that I would be presented with arguments on why intervention was a bad idea. At that point I figured we would engage in some kind of dialogue about the different types of interventions, pros and cons and in the end we would have to make specific decisions on what types of interventions we wanted to insist on.
Instead I heard this.
"We aren't equipped for any kind of interventions. If you wanted to do that you would have to deliver at a different hospital."
He basically said that they are equipped to handle premature babies but that is about the extent.
My husband asked for some clarification regarding what they were not equipped to do with a Trisomy 13 baby.
He started listing examples of things they wouldn't be able to do. Like surgeries. For example if the baby needed heart surgery they wouldn't be able to perform it at that hospital.
I pointed out that we had already met with a fetal cardiologist who told us that heart surgery wouldn't be performed at birth for a VSD on any infant. She also pointed out that Trisomy 13 babies don't die of heart failure they die of respiratory failure because of the Apnea. The brain simply does not send the signal to breath. She also specifically stated that the hospital we have been planning on delivering at is "more than equipped to handle the needs of a Trisomy 13 baby." (My husband at the time told me he got the vibe of "since there isn't anything we can do anyway" but I didn't pick up on that at time time. Now I fear he might have been right.)
The response to that was basically, yes that's correct but if the baby did have to be put on any kind of breathing assistance we aren't really equipped to do that and then send them home. For example if the baby needed to go home with a c-pap machine we wouldn't be able to provide one.
He also brought up feeding tubes and said again that wouldn't be something they could provide for at home care.
A pretty much exact quote.
"If you were planning on actually taking the baby home, we wouldn't be equipped for that."
In other words, we are only equipped if the baby doesn't survive.