Friday, September 17, 2010

Jilly's Broken Heart

The other day, the boys and I were driving in the car and out of nowhere Oli said, "Mommy, my heart is getting bigger!"
 "Cool buddy, it's good to have a big heart," I said. 
"Mommy, is Athan's heart getting bigger too?" Oli asked. 
"Yep, Athan's heart is getting bigger too."
"Mommy, is Jilly's heart getting bigger?"
Hmm... here I paused for a minute, not sure exactly what to say. "Well..." I started. "Well, right now Jilly's heart is broken."

"Her's heart is broken in your tummy, Mommy?" (And yes, he said, 'her's heart'.)
"Yep, honey, Jilly's heart is broken in my tummy, but when she comes out, we're going to fix it."
"Are we gonna fix it with tape?" 

"If only it were that simple," I wanted to say. But, I said, "No, we're going to take her to a doctor and they're going to fix her heart. You know, Athan's heart was broken when he was born too, but the doctors fixed it for us." 
And at this, Athan with his tiny voice said, "Awww... why's Jilly's heart broken?" 
Again I paused. "Umm... I'm not really sure buddy. I wish I knew. But, the important thing is that we're going to fix it."
And at that they both seemed satisfied, but it made me start thinking, exactly what should we tell them? What are we going to tell them when she's in the hospital after she's born and then again a few months down the road?

They're so young- so "little". But, I think they understand more than I give them credit for. I know they don't really understand. The heart is really this foreign thing to them. They can recognize a "heart" shape, but they don't know what their "hearts" really are. So, I'm trying to keep it as simple as I can for them. I know that's what they need, and really, keeping it simple makes it easier for me, too. Sometimes looking at this situation from the view point of a two and three year old makes this almost bearable. 


  1. Yes, explaining such adult things to a child, things we struggle to understand ourselves, is hard. I think they find their own understanding of things (ie...Jonathan turned into and angel just like caterpillars turn into butterflies). Do keep it simple but I think it's good you aren't pretending everything is just fine either. Good job. This is one of those situations in life you have to roll with and just take questions as they come and answer them the best you can.

  2. Hi! I found your blog through Mommy Wants Vodka. I just wanted to come and say hello, and that your family will be in my prayers, and that I understand (somewhat) what you're going through.

    My middle son, Liam, was born with Transposition of the Great Arteries (aorta and pulmonary artery were switched around), which was complicated by pulmonary stenosis (pulmonary artery was not strong enough to act as the aorta if they tried to just switch the vessels back to where they should be), numerous septal defects (holes in the wall of the heart--which actually were what kept him alive), a double outlet right ventricle, and he had no right subclavian artery. Also, on top of all that, he had a horse shoe kidney (one kidney instead of two, in the shape of a horse shoe, with multiple ureters--luckily it doesn't really cause problems).

    Oh, and did I mention we were living in Germany when he was born? We were.

    The German surgeons had a procedure that they decided would be best (a Mustard-Senning procedure), but that he would probably need a heart transplant in a few years. The American cardiologist who was consulting on the case wasn't comfortable with their plan and sent his catheterization video to several surgeons in the US. A surgeon at The Children's Hospital of Philadelphia (Thomas Spray) called him back and said he had performed a procedure (the Nikhaido Procedure) a couple of times, and that if it worked, he shouldn't need a transplant.

    So, we were med-evaced from Germany to Philadelphia, and when my son was 9 days old he had surgery. It went great! But, one of the stitches tore and opened a new hole in his heart, so a few days later he went back in to surgery to repair the new hole.

    And he just turned 6 three weeks ago and is doing great! He'll have to have more surgeries (one in the very near future). His pulmonary artery was replaced with a donor vessel, which will not grow with him and will need to be replaced every 5-10 years for the rest of his life.

    O.K., so this has turned into the longest comment ever, and may or may not make any sense, because I'm running on about two hours of sleep.

    As for explaining to your other children, just keep it simple. My oldest was 5 when Liam was born, and we simply said basically what you said--Liam's heart is broken, and he has to have an operation to fix it, and mommy and daddy are going to have to spend a lot of time away from you for a bit while he's in the hospital, but we love you so, so much and will miss you every minute.

    We had a daughter about a year after Liam was born (in fact, she was born on the one year anniversary of Liam's surgery), and we've had to explain it to her also (why Liam can't play outside when it's really hot and humid, why he has a scar, why he sees a special doctor every 3 months). It was different for her because she's never known a different life. For her it's just normal to have a brother with a heart condition. Your boys are young enough that it's probably the same. It's just normal life for them--especially since one has already been through this.

    O.K., really, longest comment ever. I'll stop now.

    I hope everything goes well, and you and your family will be in my thoughts and prayers.


  3. You're all in my prayers.

    My gotcha word is 'slumesse' Why yes my house is slum messy why do you ask?