Drumbeat Heartbeat

There is something wonderfully primal about drumming. It takes you out of your thoughts and right back into your body, harkening back to the very first beat we heard in the womb-- the beat of our own heart, that of our mother, and the rhythm created between the two. The connection between drumming and the heart is self-evident. If the heart is "the beginning, the fountain of all things in the body, the primary cause of life," drumming is our first rhythm, tied to the origin of music, to community, ritual and rites of passage.

Kai has long been drawn to drums, as many children are (there's nothing quite like sticks + loud noise). While we were listening to "Paul Militello and the Rhythm Family" at the first ever Water Hill Music Festival last weekend (a fabulous celebration of local music, community and front porches in a neighborhood with water-related street names), Kai suddenly got up, walked down to the drummers, sat at one of the available drums and joined in playing. He did this without my (or the drummer's) invitation and with such self-assurance and resolve that it felt he was being summoned by the drums. His friend, Benny, came down and joined in, too. Here they are playing (bottom right hand corner).

I found this quote interesting in terms of making a connection between the heart, health, rhythm and seeking some kind of internal balance in stressful times (which they certainly are, on both the global and personal level):

"Our heart is the metronome of our body's biorhythm, and health happens when we are in rhythm within ourselves, synchronized with other living systems and moving to our present beat rather than trying to respond to the driving beat of the stressful outside world ... Healing, then, becomes the ability of our heart to improvise and develop its own new rhythms to the chaotic rhythms that continually emerge in our daily life." (Pearsall, The Heart's Code)

Dream song

Kai has been dreaming about lions and tigers a lot lately. They prowl around the house and try to get in. Sometimes the good dinosaurs manage to ward them off, though.

This morning Kai told me how he could still hear the lion roaring in his dream, and then he began singing a made-up song, after asking for requests ("mama, do you want a child song or a grownup song?").

The lyrics to his song were mostly silly, so these few thoughtful lines really stuck out:

When the sun goes away

the clouds come in

and go into your dreams

Finding balance

Had we not learned about Kai's condition a month ago, we probably would have noticed that something was not quite right by now. It would seem troublesome to us that he often complains of tired or painful legs (the medical term for this is "claudication" and is typical of aortic coarctation until it gets treated) or that he sometimes has a hard time keeping up with his more energetic peers. But maybe we would have just written off his complaints as growing pains and attributed his fatigue to a bad night of sleep. Now we interpret and react to things from the perspective of our new knowledge. We know that there is a something wrong, even if we can't see it. We know that in less than a month, he will be in the hospital. We know that things will be done to his body about which he has no clue. This awareness is unsettling. It makes us vigilant about every harmless little cough or stomach ache. In a way, we've been thrown back to the first year of parenthood when he seemed so fragile and we were inexperienced. One of the nice things about Kai's evolving independence in the last year was that we could relax, let go and just let him do his own thing. Now we feel protective again and it is sometimes hard to distinguish between the things to justifiably feel nervous about and the things that are just an inevitable part of the bumpy road of childhood.

Part of carrying on life as usual is occasionally getting frustrated and angry at Kai when he dawdles or turns a deaf ear to our requests or demands attention when we can't give it to him (all completely normal for his age). Part of me feels terrible when I scold or discipline him, because theoretically each day is so precious now. But, we also want to preserve a sense of normality and, of course, normality spans the spectrum from tenderness to annoyance.

Some people say there is a lesson to be learned in every challenge presented to us in life and I've been wondering what we are meant to learn from all of this. I inevitably think back to Kai's first year in Boulder when we took him to weekly physical therapy sessions to work on mobility issues related to "torticollis" (a twisted neck muscle that probably occurred in the womb when Kai suddenly decided to go breech in week 36). While other children his age were passing those developmental "milestones" of rolling over, crawling and sitting, Kai was just lying there. I had to force myself not to compare him with the other children, to accept where he was at developmentally, and to trust that he would eventually catch up--which he did. I thought I'd learned that lesson of humility and gratitude, but I guess I didn't fully internalize it. Otherwise I wouldn't be thinking critical thoughts such as "why isn't he speaking German back to me, as other bilingual children do?" or "others don't seem to have a problem diving under water, why is he so afraid of getting his hair wet?"

Kai's diagnosis, and the month we have to digest this news and prepare for the surgery, is forcing me to confront all-too-familiar patterns of criticism and expectation, when it is actually so easy to delight in all of Kai's gifts (he's smart, good-natured and has a quirky sense of humor). Likewise, it is easy to worry about all the things that can go wrong during and after surgery and to dwell on the fact that statistical odds have not always worked in our favor. But, in fact, there is much that is positive and that can go right. In the beginning, those positives held me afloat. I made lists of them (1. early detection 2. excellent surgeons at UM 3. no heart damage 4. my insurance covers everything 5. timing of surgery is good in terms of work schedule 6. young children bounce back quickly from surgery 7. we have wonderful family and friends ...) and whenever anyone mentioned another one, I clutched on to it. Now those positives compete with statistics about surgery risks and anxiety creeps back in. The lesson I need to learn quickly is to cede control and to have faith. Ah, yes, faith. That one sounds familiar.

A collection of smiles for a rainy day

Brushing up on my physiology

Not knowing that the trip to the hospital would turn out to be an 8 hour long ordeal, ending past midnight with a completely unexpected diagnosis (after all, the pediatrician had said that the heart murmur was probably nothing, she just wanted to be sure), Chris was originally going to stay home. It was good having him there in the hospital because he definitely has the more scientific mind. He immediately grasped the cardiologist's explanations (presented to us at 2 am), whereas I needed a drawing to be able to visualize what was going on. And even then, I had a hard time processing the information and relating what he had drawn to the pumping heart we'd seen on the echocardiogram screen. For over an hour we watched the expansion and contraction of Kai's heart. The opening and closing of the valves was mesmerizing, like a butterfly opening and closing its wings. Kai kept very quiet and was captivated by the images, eventually falling asleep. There was a strange hush in the room before the cardiologists finally explained what they had found. We heard what they said, but there was an immediate disconnect between hearing, understanding and feeling. Feeling happened later.

Here's an explanation of the image the cardiologist sketched for me above. The heart is a busy muscular organ, beating 100,000 times a day and pumping 5 quarts of blood every minute. It is a pump that takes in used, oxygen-poor blood, sends it to the lungs to get refreshed with oxygen, then pumps the re-oxygenated blood to the rest of the body. Without the heart, blood --and the oxygen and nutrients it delivers--would not flow.

The heart has four chambers (two on the right, two on the left) and four valves (which open and close with every heartbeat like gates). The heart's division between right and left sides protects oxygen-poor (blue) and oxygen-rich (red) blood from mixing. To understand the different terms and their functions, I broke down how the blood circulates from the body into the heart, to the lungs, back to the heart and then back to the rest of the body is a 10-step process:

1. Blood used by the body enters into the heart's upper right chamber (right atrium)

2. This blood gets pumped through the tricuspid valve

3. into the lower right chamber (right ventrical)

4. then is pumped through the pulmonary valve to the pulmonary arteries

5. which direct the blood into the right and left lungs. The blood gets oxygenated in the lungs and turns from blue to red.

6. The re-oxygenated blood flows back into the heart's upper left chamber (left atrium)

7. through the mitral valve

8. into the lower right chamber (left ventrical)

9. through the aortic valve to the aorta, the body's largest artery and central conduit from the heart to the body.

10. The aorta branches off several times: to the head and neck, the arms, the organs in the chest and abdomen, and to the legs.

Kai's heart defects exist in two places (#2 and #10). His tricuspid valve (the doorway separating the right upper and lower chambers) has two, instead of three leaflets. His aorta narrows before it branches off to the legs, thereby forcing the left ventrical to work harder to pump enough blood down to his legs.

Ticking clock

Now that we've decided on surgery and set a date, we are just waiting, trying to carry on with our lives as usual. But the clock is ticking, sometimes quite loudly, and I catch myself counting down the weeks. I've been holding Kai more tightly, look in upon him while he is sleeping more often and have become more vigilant about his health. I've noticed that he has a harder time keeping up with his peers and more frequently complains of "tired legs." Hopefully he'll be able to run and play again with abandon once the blood flow to his lower body is adjusted. I wonder how much more active a boy he would now be if everything were normal. Will the operation change him, his sense of self and his body? They say that the younger children bounce back more quickly from surgery and that their self-identity is less defined by the disease than for adolescents.

The son of an acquaintance had to have heart surgery when he was 11 months old. He had a hole in his heart. Before the surgery, he hardly ever smiled. When he had healed from the operation, he began smiling. That is a very moving story to me--to finally be able to feel less pain, move and breathe as self-evidently as his peers. I wonder how much Kai's quality of life will improve. He is such a joyful child, but perhaps he will blossom even more once the blood flows as it should.

I have also heard incredible success stories of life after childhood heart surgery. My colleague's sister was one of the first children, if not the first, to have a heart operation at the University of Michigan in 1960. Now, 60 years later, she is an extremely active, strong-willed athlete who has disproved the doctor's prognoses.

Photos of Happier Times

Summer 2010 in Colorado

Fall 2010 in Ann Arbor

Learning not be afraid

We haven't broached the subject of surgery with Kai yet, but this weekend he showed a mature streak that will serve him well in the months to come--how to deal with fear. He seems to have safely navigated past my bout with the flu and Chris' cold/sinus infection. What a relief! If he gets sick, we might have to postpone the surgery which is now exactly 6 weeks away (yikes!). While we were sick (I was quarantined upstairs in the house, only coming down with a face mask), we told Kai that he would have to keep his distance from us. Over the weekend, he had to occasionally entertain himself in his room while Chris took a nap. One rule was to absolutely NOT wake us up at night (which he'd fallen back in the habit of doing, crawling into bed with me after a nightmare). So, one night there was an incredible storm with thunder so loud it felt like the sky was being ripped open repeatedly. I was sure Kai would wake up crying. As it turned out, he did wake up, but kept still. When Chris checked in on him, Kai told him that he was scared, but that holding on to his beloved Bama made him less scared. A breakthrough moment in terms of self-control and also, without him knowing it, good preparation for the time ahead, which is sure to be scary.

Introduction

As some of you know, in mid March Chris and I learned that our son Kai (now 3.5 years old), has a congenital heart defect known as "aortic coarctation." 1 in 10,000 children are born with this particular condition and it accounts for about 5% of the congenital heart defects, more common among boys than girls. Coarctation refers to the narrowing of the major artery that carries blood to the body. In Kai's case, the narrowing affects the blood flow to the lower part of his body so he sometimes complains of tired legs and his feet get cold ("cold feet, warm heart"). Most significantly, he has low blood pressure in his lower body and, subsequently, higher blood pressure in his upper body. To ensure that the lower body and organs get enough blood, the body compensates through elevated blood pressure in the upper body. Over time, this high blood pressure causes damage to the heart and, if uncorrected, puts Kai at risk for heart failure, strokes, aneurisms and the sort. Life expectancy for untreated coarctation is about 30 years.

In some cases, the coarctation is so severe and noticeable, that children are operated at birth or shortly thereafter. Others don't find out until their teens, during a routine physical. That our general pediatrician discovered it now is quite rare. We had gone in for a checkup to make sure Kai had recovered fully from his strep throat. Everything was fine until the pediatrician heard a heart murmur. 75% of children will have a heart murmur at some point, usually after illness with fever, and then it will pass. When we went to the hospital to get a chest x-ray, then an ekg and an hour-long echocardiogram, they discovered the coarctation, along with a bicuspid valve (two flaps instead of three). This news came well after midnight, on St Patrick's Day, in an Emergency Room so full that children were being treated in the hallway. Fortunately, Kai's heart hasn't suffered any damage yet and his heart muscle is strong. If the surgical removal of the tissue causing the narrowing is successful, he should be able to live a normal life without special precautions regarding physical activity. He might have to avoid weight-lifting, rowing, shoveling snow (too bad, Chris!) and roller-coasters, but aerobic activity such as soccer, baseball, tennis is fine. There is a 3-5% chance that the narrowing can reoccur over the course of Kai's life, but then it can be successfully and less invasively treated through angioplasty--and that is a growing field with innovative techniques. The long-term prognoses are a bit speculative, though, since the data only goes back to the 1990s. He will probably have yearly followups for the rest of his life, including a doppler/MRI test every 2-5 years.

Within the shock of this news, we've found hopeful aspects, most importantly, early discovery and the fact that the University of Michigan Congenital Heart Center is #4 in the nation. Our surgeon, Dr. Ohye, comes highly recommended, with over 15 years experience as a heart surgeon who has specialized on children since 1998. The moment we walked into our consultation meeting with him, we liked him. He exuded competence, efficiency and clarity, and is also a very personable, caring individual. Over the last month, he has patiently fielded my many questions via email. At a critical point, he said that I could continue to ask as many questions as I want, but that ultimately we have to take a "leap of faith" and trust the experts. Mentally getting to the point of acceptance and trust was not easy, but it is the only option. "You can't go over it, or under it, you've got to go through it"—as one of the books on Kai's bookshelf reminds us.

The surgery is now scheduled for May 24, 2011, barring any respiratory illnesses or other emergency operations (children get flown in from all over the country) that might intervene and would mean pushing back the date. Thus far, Kai doesn't know anything, although I'm sure he senses our anxiety. He's gotten so interested in medical paraphernalia and loves doctors, for now. The recommendation is to carry on with life as usual and start preparing Kai a few days in advance, including having him tour the hospital premises.