Thursday, December 30, 2010

Normal is as normal does (Part 1)

Recently, I came across a Baby Center post from a woman who had received a prenatal diagnosis of HLHS and was planning to terminate. (She did indeed terminate the pregnancy, which saddens me beyond belief, but I understand she did what she felt she had to do, in feeling that her family was not prepared to care for a medically fragile child. I can only imagine the sadness that enveloped her household after the procedure (I can't recall whether she went through L&D or had a D&E, which is similar to a D&C, but is performed later in the pregnancy - she was near the midpoint of the pregnancy.) What saddened me possibly more than anything was the responses that the woman received in discussing the termination. She received several responses from other women who had terminated for HLHS because it was "just cruel to bring a child into the world who would be in such pain, who would never get a chance to be normal." The response that stuck with me the most was where the writer questioned whether the "success" stories she read online weren't perhaps not entirely truthful, and that the parents were simply hoping their child might be "normal" but in fact were not. So today, my blog entry is dedicated to that writer, and anyone wondering whether a child with HLHS is really "normal". Here goes...

Bodie had a ROUGH start. A ridulously rough start. 3 open heart surgeries, 2 cardiac catheterizations and long hospital stays that actually had nothing to do with his cardiac condition - all before he turned 7 months old. But, once we got past that point (honestly, once got past his MRSA admission), life was been wonderfully, blissfully NORMAL. Am I hiding his medically fragile condition somehow, to try to give the appearance of normal? NO. Am I normal? I'm getting there - I'm starting to finally relax and not freak out quite so much about him. But Bodie? He's pretty dang normal. How so? Well, here's a peak into our lives and you can decide for yourselves...


This kid eats. And eats. And eats. He eats everything by mouth (no feeding tubes whatsoever). He takes several bottles a day - we're at about 1/2 fortified breastmilk (pumped breastmilk mixed with a little bit of formula for calories and thickener, since he still won't give it up :-)) and 1/2 straight formula. He eats 4oz of yogurt and cheerios for breakfast and 6-8oz of jarred babyfood with lunch and again at dinner. In between, he's constantly snacking on crackers and cold cereal and whatever table food he can grab off our plates. Yep, he likes food. He also likes to barf it up - generally about once a day or every other day. But Sierra was a barfer, too (not to the extent that Bodie is, but she definitely did her fair share of spitting up). So, it may not necessarily have anything to do with his medical condition. He generally only does it at home and he's able to gain weight in spite of it, so we don't worry too much about it.


He sleeps through the night (thankfully) - from about 8pm-7 or 7:30am. We're working on the naps, but he's getting back to a nap schedule (the mouthful of teeth that decided to come in all at once kind of derailed us) of 9am, 1pm and 5pm(ish). One of those naps is usually 90min, one is 60min and the last one is 30-45min (he likes to change up which is which just to keep us guessing). :-) Although he does cry when he goes down, a little bit of sleep training seems to have gotten him back on track of falling asleep fairly quickly.


He is army-crawling everywhere, but his favorite is our kitchen floor - so gross. No joke, tonight, he insisted on crawling around the kitchen floor while Dusk was making pizza - at one point, I looked down and noticed he had flour ALL OVER HIS SHIRT AND PANTS. Ah well, at least it's less for me to mop up later, right? His singular mission in life these days is to put anything and everything in his mouth - and even better if it's a choking hazard. Last week, in one afternoon, I fished out the foil from a reeses peanut butter cup wrapper, carpet fuzz and a piece of tinsel (mind you, we've never put tinsel on a tree in this house, so yeah, he's pretty hard core to find stuff like that). Full crawling is still a little ways away - he won't get up on all 4's by himself, but if you put him up on all 4's, he will start rocking like he's just raring to go. He can also sit unassisted for long periods of time, and loves to sit and play with his toys (as long as someone, preferably mommy or sissy, is sitting right next to him and playing with him - he's not so good at the whole independent play thing). His current favorite is taking the blocks out of his shape sorter and then crying until someone put them back in for him, only to start the whole process all over again. He claps, he waves, he gives slobbery kisses to mommy (just started that - it's so cute). He also loves to go for walks, especially to the park. He's babbling all the time - dada is his current favorite. Dusk is loving that one. :-) We're finally starting PT, twice a week, just to catch him up in his gross motor skills.


Ah, this is where the whole "medically fragile" thing comes in, right? Ok, yeah - a bit. But it's not too bad. Bodie is on 3 meds a day - 1/2 a baby aspirin, Enalapril (2x/day) and Sildenafil (3x/day). The aspirin I just give to him with his breakfast and he chews and swallows it down. The other 2 meds are both oral. So, I prep his syringes at night for the next day - I mix the 2 meds together, so he gets 3 syringes total. Last night, it took me a minute and a half to prep all 3 syringes. He gets one syringe at breakfast, one at lunch and one before bath at night. Pretty easy stuff. He sees his cardiologist monthly (I think we'll be spacing them out even more after this next appointment, provided it goes well) and his electrophysiologist (to manage his pacemaker) quarterly. He's sees his pediatrician for well-baby checks. And that's it. Do I still hook him up to a pulse ox machine? Yes, I usually spot check him once a day (I basically put a bandaid on his foot, connected to a wire that goes into a little machine next to his bed - pretty much as noninvasive as you can get). Do I still weigh him? Almost every day. But, I don't have to do either of these things anymore. They're both habits that I'm working myself out of. Like I said, Bodie had a rough start and some habits die hard.

The future? I don't know. The reality is that there is a very good chance Bodie will need a heart transplant someday. Maybe soon. Hopefully not. The fact that he has his genetic arythmias and some thickening of his right ventricle increases the odds of him needing a transplant, they think. The reality is that no one knows. Every hypoplast is different and his doctors have never seen a case like this. All of his extra quirks may not make any difference to his long-term prognosis. But we do know that the oldest survivors with HLHS are in their 20's and some are doing quite well without even having needed transplants. So, we have great HOPE for Bodie. This field of medicine is moving at lightning speed. 20 years ago they were just starting these surgeries and most patients who underwent them didn't survive. Now, many centers have survival rates upwards of 80 and 90% with these surgeries. The landscape of treating HLHS has changed dramatically in the last 20 years. So why would I worry about what might happen 10 or 20 years from now? I don't. We'll get there when we get there.

I don't say this to brag about how great Bodie is doing, because I know, as with all cardiac kids, things could change on a dime. And they have changed before for Bodie. But that's true even with heart healthy kids. We heart parents just have the luxury of understanding how quickly things could change, so we appreciate each day a bit more. But I say this to give HOPE. Although the beginning, almost without exception, sucks, it can get better. Kids with HLHS can and do lead "normal" lives. I know many others, like Bodie, who really are doing great. And, let me make it clear, I know those with feeding tubes or on oxygen or who have to have daily injections to avoid blood clots, or have even had strokes (kids are remarkably resilient) and they, too lead, normal lives. They are cute, sweet and vibrant children. No fancy schmancy language. It's that simple. So take that, Baby Center poster. :-)


  1. Great post, Amy! Very honest and straight-forward. Now if only you were "allowed" to post it on that Baby Center thread without being chastised and having it deleted! Ugh.

  2. I LOVE this post. Like some of the posters on baby center, we were told that our child would have no chance at a normal life. What's "normal" anyway? I, too, was thinking termination after all of the negative info received. If it wasn't for the internet and HLHS success stories, Wyatt might not be here today and that breaks my heart. I wish with everything that he didn't have to go through the surgeries and the pain, but he is such a happy boy! He smiles more than anyone I know. He flirts with the nurses. He is just such a blessing! The road is difficult but we are so happy!

  3. Such a great post!! I couldn't have said it better myself! I too was given the option to terminate and only had that day I found out of Jack's condition to decide. And to be honest, I never even thought that to be an option. When I told the doctor that I wouldn't terminate, his smile became so huge it encouraged me and I knew I made the right choice. Jack is my first child and although the first months were hard and overwhelming, I look at him and always say... what heart defect? And when new people meet him, I feel like its jack and my secret that he has one. So many people say, "now isnt that the picture of perfect health", and alls I can do is smile, With a tear in my eye ofcourse. Jack is worth everything we have gone through, all emotions, all the tears, all the fear, and ofcourse all the happiness. One day, I hope he can look back and say the same thing!