It's nap time. My precious little daughters are sound asleep right now, dreaming peacefully. I keep thinking of them. I am grateful for them. I am grateful for Anna Brooke and her health. I am grateful that she is so intelligent and that she's the most sensitive and loving big sister. Mostly, though, my thoughts keep drifting to my sweet Emma Kate, who I can hardly believe will turn a year old next Wednesday. This has been the longest, most event-filled year in my life. But I'll save that for another post.
For some reason, big milestones always bring me to the realization that there is a living miracle in my house. A baby that lives and thrives with half of a heart. A baby that is now crawling around everywhere, pulling up on everything in sight, getting into every drawer, cabinet and corner that she can. It's beautiful.
And every day for the past year, I see that faded scar, I kiss it and I realized how truly blessed I am, how blessed we are as a family, and how blessed she is with life! Her life is so precious. I am joyful because my baby is alive! I am joyful because she has lived the last twelve months as my daughter and she has done so amazing.
But I am really struggling. My heart is so heavy and my mind is burdened. When I think about my daughter, I can't help but think of other children who have heart defects like Emma Kate, who are not so fortunate. Kids who are in and out of the hospital, who have so many more challenges, who are waiting for a heart, who have complications... who have lost their lives in this horrible battle. It deeply saddens me. Every day I pray for others who are struggling, and I realize how very fortunate we are. May I never take that for granted.
Something has been tugging at me for a long time now. A lot of stirring has been going on in my little heart and it won't settle. It is determined to get out, no matter how much shoving I have done. I've thought long and hard about how to approach this topic. Quite frankly, part of me doesn't want to, mostly because it is so controversial. I'm not really one who likes to ruffle feathers, especially if I am unsure of my audience. Plus, I'm just not an expert. I only know my own reality, not any else's.
You see, when I was pregnant with Emma Kate and we found out about her special heart that day, it never entered my mind that we might lose her to this. Maybe that is being naive. Or maybe it's being hopeful, I don't know which. Either way, we were told that because of her heart, she would need to have surgery to survive. That's it. End of story. No other options were given to us. Why should they be? We didn't know any differently. Then, a few weeks later, I was researching, Googling, doing all the stuff you do when you have no idea what Hypoplastic Left Heart Syndrome is or what it means, and I came across something on a message board called "comfort care." I had no idea what this was. The words "comfort care" sound really, uh comforting. What is this about?
As I went on to read about more about it, I was completely shocked at what I was seeing on the computer screen in front of me. Comfort care, if you are unfamiliar, is an option given to certain families when a poor diagnosis has been established, such as Emma Kate's. In essence, "comfort care" is opting to do nothing. No surgery, no waiting for a transplant heart. It is refusing treatment of any kind. And in my opinion, it is also refusing to give your child a chance at life.
I have a few problems with this choice. I cannot understand why this is even an option given to the parents when there are treatment options available! If there is a chance (even a SMALL one) to save my child, you better believe I am going to give her that chance! Why wouldn't I? I guess you could argue that perhaps she might suffer more in life if she has surgery. And certainly, that wouldn't be ethical, right? Still, even if the odds are against her, they are still better than if she is offered nothing. If my child has a 10% chance of survival with surgery, it's still better than a 0% chance of survival with "comfort care."
I guess you can tell by now that I have a really hard time justifying "comfort care." Can a doctor predict how the child will do in surgery or what complications they may or may not have? Perhaps. Emma Kate could have had any number of things go wrong during her surgeries. Blood clots, stroke, even death. But does this mean her life isn't worth fighting for? One
article I found on this topic was published by the American Academy of Pediatrics. It discusses whether comfort care only (CCO) is an
ethically acceptable option and what determines this. Is it ethically acceptable for parents to withhold the right to life that these babies have at birth? I guess that depends on who you ask.
Let's ask my heart mom friend, Tricia about this. Tricia has two daughters, just like me. Her oldest is heart-healthy. Her youngest, Olivia, was diagnosed with several fatal defects, including heart defects, at a Level II ultrasound before Olivia was born. The doctor performing the ultrasound advised Tricia and her husband to terminate the pregnancy; that her quality of life would be poor. This doctor was advising them of what he felt was the
ethical option. Despite all the odds and all of the "guidance" that was given to them, Olivia is now a beautiful, happy, healthy 5 year old! One thing I admire so much about Tricia is the fact that she fought so hard for Olivia. She sent letters and pictures to that doctor that advised her to abort Olivia's life. You can read Tricia's letters by clicking
here.
I realize that terminating a pregnancy is slightly different than comfort care. But essentially, it is the same: you're not giving your child a chance at life. In the end, I am so glad that termination and "comfort care" was never an option that was even presented to us. I think that if it was, I wouldn't have had near as much hope for my daughter. And at the very least, I would have probably questioned the doctors more and wondered about their prognosis for Emma Kate. I'm glad that I never wondered about that. I always felt that they had confidence in their work and in her. It makes me really sad that some doctors present these options. I bet they don't realize the impact it has on families.
I would go through anything for my girls. I will fight for them with all that I am, every day of their lives because they are priceless! Did it get tiring staying at the hospital when we had some complications? Sure. Was it nerve-wracking sitting and waiting for a phone call with how she was holding up in surgery? Of course! Did it completely suck to have to get up at night to change the feeding pump that was beeping again? Yes! Was it the hardest thing I've ever done to see Emma Kate intubated and miserable from the pain she was in? Absolutely. Do I think that any baby should have to endure any of this? Definitely not. But I would fight for her and cheer her on all over again! If your baby is going to survive, it is going to require that you fight for her. Babies cannot make this decision. They only have their parents to speak on their behalf.
Speaking of weight, EK now weighs 15 pounds, 8.2 ounces, according to the scale at the cardiologist's office today. She's gained a lot since she was there four months ago! Even better news is that Dr. Law did a quick echo and said her heart function was really good. Go Emma Kate! Her sats were 80 and everyone kept commenting on how great her color is! And of course, she was showing off her waving and saying bye-bye skills to everyone we saw.
