Turning 70: My Daughter’s Heart

I have been writing a multi-part mini-autobiography to kick off this new year and in commemoration of my 70th birthday this past December 28th. So far, the plan to have mini-celebrations during my 70th Jubilee Year is working out well. I had a nice intimate lunch with an old friend this week; next week I’ll celebrate with my two oldest friends, former college roommates. Then I’ll try to think up/create more reasons to keep celebrating.

In the meanwhile, back to my story. I left you at the point when I had retired from my 22-year career as an ESL (English as a Second Language) teacher with the words, ” But little did I know I was about to face an even bigger challenge.” Before I continue, I must double back a bit because I’ve left out a very significant part of my story. The fact that I haven’t even yet mentioned it, tells me how much I have internalized this part of my life. But it must be included because it has defined so much of my life.

In 1981 I gave birth to my second child, a beautiful baby girl. At our first followup visit with the pediatrican about a week later, he mentioned that he had detected a heart murmur at her birth, but hadn’t said anything because “sometimes they resolve themselves.” Well, the murmur was still there and he was now referring it as a “probable hole in the wall of the heart between the two ventricles, known as ventral-septal defect.” There was no cause for concern, he said, because my baby was thriving.

At age two C. had pneumonia and had to have a chest x-ray . A sudden call from the doctor’s office propelled us to bring her to the cardiology hospital nearby to be examined. Apparently, her heart appeared to be very enlarged on the x-ray. As we drove her to the hospital, my life flashed before my eyes: she could possibly die.

It turned out that the xray was misread due to a benign condition that can cause the heart to appear inflated when a baby is crying. I felt as though we had dodged a bullet. What I didn’t know was that the official report from that visit stated “suspicion of subaortic stenosis.” We were dismissed from the hospital with the very casual recommendation from the pediatrician to bring her in for a checkup before she began kindergarten. No mention of the subaortic stenosis.

Three years later, I waited till the end of that summer to bring her back to the cardiologist for that checkup because I was preoccupied by the fact that my father was critically ill. After the routine tests that day, the cardiologist asked me to hang around for a bit while they “checked out something.” I was clueless. The next thing I remember was hearing the words, “she needs to have open-heart surgery as soon as possible.”

I felt like I had been hit over the head with a two by four. This kind of thing happened to other people…was the thought going through my mind. I was alone that day with my young son and daughter: my husband and I had absolutely no idea how critical this visit would be. Her condition had advanced to such a degree in a couple of years that it was now life threatening.

I could write a book (and maybe I will) about what happened from that day forward, but I will attempt to truncate the story as much as possible. C. had her first open-heart surgery a few weeks after she started kindergarten. It was the pediatric cardiologist’s advice that she start school to bond with her teacher and new friends before the operation.

I will never forget seeing her wheeled away from us on the hospital bed toward the operating room; I had to accept that I might never see her again. But she survived the operation, and even the insane aftercare which limited our visits with her to a few minutes a day in the ICU. It was a life-changing event for all of us. Eleven days later, she and I left the hospital and began to pick up the pieces of our lives. We were told, by the same pediatric cardiologist, that this was probably a one-time event and she’d be fine. He couldn’t have been more wrong.

The condition, a rogue membrane that kept growing back and blocking the blood flow through her aortic valve, kept happening and she was forced to undergo four more open-heart surgeries at ages 13, 21 and 28. For the fourth surgery she was promised the moon and was assured she would not have to have further surgery until she was much older. She was also to be given a new bovine aortic valve.

That prediction turned out to be completely wrong. Although she emerged from the fourth surgery seeming to be in very good shape, about two months later she began to feel a weird sensation in her chest. We drove her back to the hospital for an evaluation, and she did not leave until a week later after having to have her whole operation redone because the surgeon had inappropriately used the wrong bonding material to attach her heart muscle to her new tissue valve.

There are no words to adequately describe the hell C. went through that year and several years afterward as her body and mind struggled to recover from the physical and mental assault to which she had been subjected. As her parents, we were as supportive as we could possibly be, but we couldn’t take away the mental anguish and physical pain she endured.

All this was happening during the years I have described as my Early and Later Middle Years, while I was fighting with all my strength to establish a career and a way to financially support my family. Some administrators were supportive; others made my life miserable. Financially, I was in no position to just quit working, so I did my best to persevere through it all.

Fast forward to five years later. My daughter has held a 30-hour per week job, and has just begun a new job which requires a lot more from her in terms of time and responsibility. I am anxious that it will overwhelm her stamina and take over her life. She does not have excess energy after a day at work, or on the weekend. She spends much of her weekend time recuperating from her efforts during the week. She is proud to be working, but she is aware that she is an employee in the new job market of extremely low salaries and ridiculously high expectations for entry-level employees.

I worry about her, and our ability to sustain the kind of support my husband and I have provided for her in the past. Our current national policies for the care and well-being of the disadvantaged do not bode well for her future, or others like her who are struggling with disadvantages that are not her fault. I do not see a kind world embracing her with open arms, providing her with the support she needs. I see, instead, a struggle for the underdog to achieve some independence and dignity in a world that is becoming more and more corporate-driven and less and less empathetic for those who have legitimate struggles.

So now you see why I had to interrupt my story to include this thread. That I almost overlooked it is shocking to me, but understandable. You see, all along…we, as a family…have had to face these tribulations on our own and do the best we could do with our circumstances. I wouldn’t trade place with anyone since the bond between my daughter and myself is so strong, and our family is very close as a result of her ordeals. But we’ve paid a huge price, physically, mentally and financially to keep our heads above water and our hearts buoyant. And we are so, so grateful that we still have one another.

(I will continue next week with my mini-autobiography.)