The jury's still out: CHDs, "developmental delays," and nutrition

The field of pediatric cardiology is relatively new. Even newer is the treatment for HLHS. Before the 1980's there were no survivors of HLHS, and even up until the mid-90's, survival rates were depressing enough to make me not even want to think about them--only about 40% for the first surgery alone. Although all fields of medicine rapidly change, there is still so much that is unknown about CHDs in general, and HLHS in particular. As more CHD'ers reach adulthood, the story continues to unfold.

All of this can leave me pretty confused as a parent sometimes. At the same time, there's something exciting about it too: I feel like I am part of history in the making, a part of something that's really dynamic and progressing at a fast rate. And yet, there is sadness too, knowing that it is already too late for so many kids who have already passed away from the silent killers known as heart defects. Sadness that in 5, 10, or 20 years, I will see technologies that could've helped my son in a much better way.

The world seems to change quickly, and in a mere 3 decades, there's a lot I can say, "it happened in my lifetime" about. However, many of these things are reflective of tragedy and stuggle. Yet, 2 of them I can say "it happened in my lifetime" about with unabashed joy: the survival of kids with HLHS (not only survival through childhood, but into adulthood, allowing people with HLHS to go to college, marry, and even see the 1st woman with HLHS to have a child of her own) and the World Series win of the White Sox :)

Thus, things in the CHD world seem to be changing more quickly than in many other areas. Still, there are questions I discuss with other parents, sometimes with vigor. The first of these is the matter of "developmental delays." Numerous studies show that kids with CHDs are at an increased risk for delays in gross and fine motor skills, speech, and eating, as well as "behavioral problems" like ADD and OCD. The risk for these problems is much greater for single ventricle children such as my son. Yet, very few outside the CHD world seem to know this, or even acknowledge it. Even when I try to tell to people I assume would or should be aware of this (like teachers, etc), it's like I'm talking to a brick wall, and I'm told to my face that my son's condition is only physical. Unfortunately, we as a culture have stereotyped and put the terms "developmental delay" or "sensory overload" in a box (popularly) to refer to children on the autism spectrum or someone with a "learning disability." In reality, children with a wide range of medical conditions and physical ailments (especially those children who have had long hospital stays) confront these issues.

The issue is complicated. At first, it was thought the CHDs themselves caused delays in other areas, but I've heard from cardiologists that the body protects the brain before anything else, and that the heart condition itself is not the cause. One recently told me that although there are often delays in the motor and speech areas, there is no actual evidence for real cognitive delays, and that the vast majory of "heart kids" catch up to their peers by 5 years of age or so. Then it was widely believed that the surgeries themselves caused the delays. The argument, quite believable, was that being on the bypass machine at such a young age, with its accompanying need to freeze the child's brain and reduce brain activity as much as possible, was the culprit. Yet, a recent study of respected cardio-thoracic surgeons reported to Children's Hosp in Philadelphia that this did not appear to be the cause, either. So what is it, really? Our cardiologist has suggested that it could be a combination of many things, including the experiences of heart surgeries and hospital stays themselves. No one has yet mentioned the possible effect of being on multiple medications from birth, but I wonder if this could be a reason. In addition, many children with HLHS have strokes during childhood, and I always worry about the possibility than many of them are too small to be noticed or diagnosed.

In any event, this is an area of research that is being worked on all of a sudden--a hot topic in the field. A cardiologist told me last weekend that, "we're learning these days that it is not enough to save a child's life through heart surgery. We also have to be good citizens and do more to find ways for them to have a higher quality of life." I am, without a doubt, glad so many are suddenly paying attention to this subject, but again, it is a bittersweet feeling, because whatever strides are made from research will certainly come too late for my own son. Even a few years before he was born, it was still pretty fuzzy that CHDer's would need PT, OT, and speech therapy services in early childhood, so I can at least be grateful that we have had the opportunity to qualify for and get these services early via the federally-funded early intervention program.

Another issue we CHD parents face some uncertainty on is diet for our "heart kids." As if we all don't get enough mixed messages about food in our country, how much more so heart families!! On the one hand, some of our children's cardiologists and dieticians are telling us "calories! add butter! whatever it takes!" Other cardiologists and parents appear to be horrified by the suggestion, because we've been so conditioned by our very own American Heart Association that "bad fats" are, well, bad for the heart--how much more so for someone with heart disease?!

Sigh, and sigh again! First of all, I apologize for offending the sense of unity and magnamity we so like to feel in the CHD world (and who can't support Jump Rope for Heart), but AHA is not really our friend. Let's not have any illusions on that matter. I will change that statement when I see AHA devote more than 1/100th of their funding to heart disease that affects children. Secondly, with their paltry 1/100th, they claim to fund research as to the "cause" of CHDs. Seriously, AHA, others much more qualified (ie, who know *anything* about CHDs) and well-funded can do this research a lot better than you. Nevermind that specialists in the field have long discounted what you say on your very own webpage--that CHDs could be all but wiped out if women stopped pesky behaviors during pregnancy--nevermind that people who know *anything* about the field reiterate over and over again that the vast majority of heart defects happen for unknown reasons, that the vast majority of "heart moms" never used drugs or had diabetes or took class D drugs during pregnancy. And even in cases where an event happened during pregnancy that is possibly linked to having a child with CHD (having a fever, virus, strep throat, or UTI), they are things beyond an expectant mom's control, and the majority of women report they did not have these problems during pregnancy. Finally, AHA is unclear about what it's talking about on the matter of heart kid nutrition: at a conference last week for heart parents, AHA had their token stand and handed me a book of "heart-healthy recipes" for kids. "Are they for heart kids?" I asked. "No," I was told. "They're for all kids." I chucked it. "Do you know if these recipes are appropriate for heart kids, many of whom are underweight and burn a lot more calories than 'all kids?'" I asked. "Um, no." I was told.

I will be listening to my son's specialists on the matter of nutrition, as well as following common sense. First of all, toddlers need fat. They need so-called "bad fats," like whole milk, for their brain development. They need calories. Heart kids need them even more--as I said, most of them are lousy eaters, and their hearts work harder, causing them to burn more calories than the rest of us. Yet, some heart parents disagree with me. They live in such a culturally-perpetuated fear of artery-clogging (a legitimate fear, but one that should be directed at sedentary adults and schoolkids, not toddlers) that they won't put butter on their toddler's green beans or give them whole milk to drink. Then again, I'm not taking my son to McDonald's or letting him have junk food, because that's not healthy for...anyone. Likewise, as always, the rule of thumb for eating anything is *moderation.* But ice cream once in awhile? Fine. Whole milk? Fine. Butter, eggs...a couple times a week, fine. Finally, going organic with the fats is a wise idea. Pesticides are stored in body fat (and of course, collect in what acts as a filter for toxins, the liver)--in us humans as well as in animals. Animals eat pesticide-laden plant products, then store the pesticides in their fat, which is passed on to those of us who eat animal fat in the form of meat or dairy.

Oh, and of course, the jury is still out about what even causes CHDs in the first place: environment, genetics, or a complex mix of both? And to that I say, "I have no idea." We do know that people all over the world, of both sexes, are born with heart defects. We do know that certain genes have been pinpointed to heart defects. We also know that the rate of heart defects is higher in certain places, such as WI, Baltimore, and China. Or how about a 4th option: completely random chance?

HLHS: Old Soul vs Old Before One's Time

Hopefully, this is the last in my 4-part series of "dealing" with several things that had been pushed aside in the course of life-changing events (returning from Mongolia, getting married, having a baby, our journey with HLHS, becoming a full time mom, etc). Now that the dust has settled a bit, many things have been catching up with us and demanding our attention.

One of the things I hear parents in the HLHS community say over and over again is that their experience with HLHS has aged them 100 years, or that they've aged beyond their time, that they feel an irrevocable sense of loss of their youth and are unequivocally adult now. I have a very old friend of the family whose grandson died of a CHD when he and I were teens, and when I talked to her about Himal's HLHS, the first thing she said was, "you're going to grow up really quickly now." I wasn't entirely sure what she meant, since I was already 29. Indeed, it has taken me a long time to fully understand just how having a child with HLHS can age a person so quickly. Is it the maturity required to go through something like this? Is it the stress and responsibility that ages us? Is the fact that most of us find ourselves at the crossroads of our relationships with God, spouse, family, friends-and some of these relationships grow exponentially, while others fall away--and become older, wiser souls?

It is all of these things--after standing at the crossroads with God for months, maybe even a year, my relationship with Him grew deeper and I learned truths I might not have otherwise. I became a lot closer to my parents and certain other family members, and left others behind who had no ability in them to provide even emotional support. I found out quickly who my good friends were versus who couldn't "handle something like this." I found out, and find out every day, which people in the world see light in tough situations and which do not (and by this, I don't mean those who provide cliches and false optimism, but those who see God's love in everything).

But, I've also realized that the HLHS experience has aged me in another way: I've become averse to change. Unfortunately, when it comes to change, I feel like a crotchety 78-year old lady. Maybe I have a touch of PTSD, but I've come to associate change with upheaval and disaster, filled with uncontrollable variables and unintended consequences. I've even become a bit of a Luddite, not wanting much more technological change in my life, thinking about starting a letter writing society (!), wishing I could go back and live in the 1970's!

I confided my thoughts on this to Esposo last night, because in the course of talking about the future lately, we've debated buying a house, debated going to day shift, etc--big changes--plus, I am starting to feel some anxiety about Himal's 3rd surgery. I feel like we've finally started cruising at a our status quo, we've finally really adjusted. I'd adjusted to our family being 2nd shift. Now, again, an opportunity or 2 has arisen that might allow him to go to a day shift--and while it's what we'd been wanting for awhile, suddenly the thought of yet another re-adjustment makes my stomach turn. It's the same feeling that made/makes me not want to move.

Anyway, in the course of our discussion I realized that disasters always seem to occur when I try to follow the herd, when I try to listen to what others say, when I try to tread the path that others do. Everyone keeps asking us "so when are you going to buy a house?" and suddenly we felt that yes, maybe we should, but then we realized that the only pros to buying a house would be having our own yard and being able to get a dog. I've always thought, long before the housing market crisis, that home ownership was a money pit, yet bosses and teachers would absolutely insist that I was wrong, that a home was the best economic investment one could make.

I love condo living. I really do. It allows us to have more amenities than we could afford in a home. It makes more economic sense--we don't all have to buy our own lawn mowers, for instance, we don't have to spend money on external repairs and upkeep, we don't have to make a time investment in the yard work. No, I can't have the garden of my dreams, yes, we have to deal with some pain in the neck people in the building, no, we don't have a yard for Himal. But plenty of people raise kids without their own yard--and we live close to parks, schools, and a nature preserve.

Our conversation went something like this:
M: I never imagined myself a homeowner. I don't want a frickin' lawn mower. That sounds like a nightmare to me. How lame, owning a lawn mower.
E: That's true. And we'd have to spend $ on other big appliances, and repairs.
M: Homes are money pits.
E: We'd just be another home in a row of many homes. On a block, within a row of many blocks.
M: And you'd be like some Ward Cleaver, marching off to work everyday.
E: God.
M: Would you expect me to iron your shirts and make you dinner?
E: Hell no. That's not why I married you. That's not what I want in a wife.
M: THANK GOD. That's so awesome.
E: Let's just keep living in condos.
M: Are you sure?
E: I think that's best.

That makes me feel better. Esposo and I have always done best when we do our own weird little thing, despite the pulls of convention, just being ourselves. I loved being in rural Mongolia, despite the horror expressed from some. We loved our Vegas wedding, despite the pull to include friends and family in something so personal. We love our condo, despite the "don't you think you should move to a house?" I love WI (Esposo a bit of a different story) despite "don't you think you should move someplace a bit more happening?" I love our beautiful little lakeshore town, despite "don't you think you should move closer to the city, you guys spend way too much time driving back and forth?" I love Esposo's funky work hours and days off, I am infinitely glad I chose to stay at home with Himal for awhile despite the pressures nowadays to be a working mom and "do it all."

I guess I shouldn't feel pressure to change and live up to others' expectations. But I do want what's best for all of us. I'm not quite certain if I'm being a stick in the mud, or allowing us to just be us. But I do know--I'm still adventurous...but for now, only when those adventures are temporary. When others around me either have gone or are going through changes, moving forward, why do I feel so content to just stay here? Do I lack ambition? Or do I just refuse to chase the elusive, knowing I have what I need for now?