I have often written about how being a Heart Mom isn’t quite like being the mom of a child with any other diagnosis. Prior to adopting Dolly my nursing experience was in Pediatric Hematology/Oncology and then General Peds. I lived in a world where a worried mom or dad sat down with a Pediatrician and listened to what the physician recommended and then, most of the time, did it. I now live in a world where no one tells me what to do. They leave it up to me. That doesn’t sound so bad, unless your choices all involve hurting, or possibly even killing, your child.
I finally got to conference call with the Peds Cardiothoracic Surgeon from Boston that is consulting on our girl (yes, it has been almost two months since we went out there, and they are only just NOW calling me…don’t get me started). While the Cardiologist we saw there thinks Dolly is not a good candidate for a bi-vent repair, the surgeon now disagrees. I wasn’t shocked by this, because it’s not uncommon for these folks to disagree, but I’ll make sure to write about the internal monologue of a Heart Mom someday as she listens to these types of opinions, because the stuff that rolls through my head is pretty crazy.
The choice has now become a little more complex. Dolly stands a small chance of a full repair, but she would be high risk. And, this surgery would require two stages. Her chest would have to be opened twice. And, if it failed we would end up with the lower risk option anyway. It sounds terrible to me. Beyond all that, it would have to happen in Boston, thousands of miles away from our support system. It would fracture our size XL family.
The lower risk surgery is one stage. It could be done in a city two hours away. It will mean our girl will need a transplant in the future, no question about it. I will spend “the next decade or two” watching her life slowly end from heart failure, liver failure, kidney issues and a host of other horrible things.
My choice, as the mom of a child with heart disease, is to roll the dice and possibly end her life early or to watch my daughter slowly die. I’m, by nature, not a gambler. But, this is my daughter. I owe it to her to seek out, research, and fight for every option. It’s a cruelty that many Heart Moms (and Dads, I’m not forgetting you), are forced to face. Right now, it is slowly draining the life out of me. It always does for the few weeks after I’m forced to face reality. I can sometimes push it to the far reaches of my consciousness. Right now, it’s fresh, raw and painful right now. There’s a deep wrenching ache that accompanies being forced to choose this way. I hurt physically at the thought of losing her.
This is my reality right now.
It has caused some hard days this week. I’ve gone to work. I’ve taken the kids to activities. Then, at night, I’ve tucked her into bed and cried.
–FullPlateMom, who can’t help thinking of Steel Magnolias. Would my baby rather have 30 minutes of wonderful or a full lifetime that might be hard? I just don’t know.