My Heavy Heart

by Leighann on September 27, 2008

I haven’t even finished telling one story and now I have a new one to begin. When I asked how much more one mother could take, I really wanted to know.

I have so easily tossed around: “A parent always gets the child they are meant to have, are never given more than they can handle, and always seem to rise to the occasion.”

It’s easy to proselytize when it is not you. And it was so cavalier for me to say when I had no issues to deal with.

Yes, my daughter’s diabetes is under control and she is healthy and problem free, right now. But we’ve been presented with another obstacle in our family.

The baby, who I guess isn’t really a baby anymore because he is now 16 months old, was just diagnosed with a condition. No, not Type 1 diabetes.

When he was about two months old, our pediatrician said she heard a heart murmur. We did an echocardiogram at three months and the results were negative. They said it was probably an innocent murmur and no holes, etc. were found.

But at every single one of his well baby visits, our doctor told me she heard the murmur clear as day and she reread the notes from the initial echo.

At his one year appointment she said that if she still heard it at two then he would have another echo.

But at his 15 month appointment she went ahead and scheduled it.

So this past week we took our little boy in for a test thinking (hoping) that it would be negative just like the last time.

Do you know how difficult it is for such a little guy to lay still with a stranger putting gel on his chest and depressing a strange wand on his chest? Needless to say he screamed and cried and gasped for air.

The technician looked a little frazzled. We told him just to do it. He might cry and scream, but do what you have to do. The tech took a break and returned a few minutes later.

We sat on the table together because I had been laying next to him to hold him down. The tech sat in his chair and pulled out a lollipop, unwrapped it, and started to lick. The baby looked at him intensely wondering what this guy was doing and what did he have in his hand that seemed so interesting.

The tech took another from his pocket, unwrapped it, and handed it to the small outreached hand.

At first he looked at it, examining it from every angle. Then he took one tiny lick. Then another. Then the whole thing went into his mouth.

I leaned him back into the supine position again and the tech got back to work. He said that he was as calm as he could possibly be now.

He managed to get all the images that he needed. My husband started asking questions, but I know they are not supposed to do any interpreting.

He did say that he saw a few things. They would be read at another hospital and we would probably hear results the next day.

***

I called the pediatrician’s office first thing in the morning, leaving a message with my cell number.

I left for work stopping at the post office on my way. The line was long. I finally heaved my pile of packages on the counter and began discussing insurance, rates, and labels. My cell rang but I didn’t answer.

When my transaction was complete I returned to my car and listened to the voice mail.

The message was not from the nurse. It was our doctor. It is never good when the doctor herself calls back. This same doctor was on the other end of the phone when I received the news that my daughter was diabetic just a few short months ago.

I almost threw up.

I dialed back the number and could not get through to her as she had already begun seeing patients.

I wanted to call my husband but I didn’t want to worry him. Not until I actually had something to report.

I waited.

I got to work.

I waited.

I went to the preschool to take my turn cleaning.

My stomach turned as I held the mop in my hand in the same exact location I was standing when the doctor called about my daughter.

Please don’t ring now. I can’t take bad news while standing in the middle of the preschool again.

I finished cleaning and sent my daughter home with her grandmother.

I  grabbed a quick bite before returning to work. As I entered the building my phone rang. I sat on a bench and listened to the news.

“Not good, but not horrible.”

I said, “You know, I am not supposed to have two children with problems. No parent should have two problems to deal with.”

“I know. When I got the results this morning and read them, I said ‘Shit.'”

I dug in my purse and found a slip of paper. I borrowed a pen from a store and returned to the bench to start jotting down medical terms.

He has a congenital heart defect. He has a bicuspid aortic valve. A normal heart has three leaflets and his has two. He has no stenosis, no regurgitation. That’s good, she told me. The blood is flowing and there is no leaking. For now.

She tells me of another young patient who just had a valve replaced. He had leaking. He’s perfectly fine now.

Oh god, could my child need open-heart surgery at some point?

I tell her that my son is perfectly healthy. You’ve seen him, I say. He’s active and running around and gaining weight and a big boy. He’s thriving.

She says she knows.

But he’s not perfectly healthy, I think. He has a heart condition. My child who was perfectly healthy a day before, minutes before, has a fucking heart condition.

She reassures me that he could live a perfectly normal life and never have any problems. Or maybe he’ll need the valve replaced at some point.

My dear child might need open-heart surgery in his lifetime. This is not how I pictured his life. This is not what I wished for him.

***

I must have talked to her for a good twenty minutes.

I am thankful yet again that we have a pediatrician who is laid back when appropriate, but takes things seriously when needed. She helped catch our daughter’s diabetes before there were major complications and she caught this heart defect even though the initial echocardiogram was negative.

So what does this all mean? We will be seeing a pediatric cardiologist every six months.

I know he will have a great life. He should be able to play sports, should he desire. He should be able to do anything he wants. And as long as the valve is not leaking and blood is flowing properly, he shouldn’t have any restrictions.

And should he need a valve replaced in his twenties or thirties, just think of the medical advances that may take place between now and then.

I have to tell myself that things happen for a reason and that I can handle it. I can bear the burden. But I just have to question why both of my children need to be saddled with burdens themselves. Why their innocence needs to be taken away. They have done nothing to deserve this.

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{ 2 comments… read them below or add one }

1 Casey February 10, 2010 at 8:38 am

I know there is nothing I can say to make you feel better. I wish I could. You are helping your children. You are taking care of your family. You are handling this. And, you have tons of support.

((hugs))

I can’t understand the emotion, because I am not a parent and haven’t been faced with this… but I can understand wanting to protect.

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2 Emma July 15, 2010 at 8:57 am

I TOTALLYunderstand your pain. And I can help, because:

I was diagnosed with Tetralogy of Fallot and pulmonary atresia at 2 days old. 9 open heart surgeries later – starting at 3 days old and carrying on regularly since then.

I am happy to say though, that my last op. was a valve replacement (I had my pulmonary valve replaced with an aortic). It was nearly 4 years ago, and everything is settled down as much as it will be for me. The op itself was an amazing success, and I would urge you not to worry (too much), if your son needs surgery.

I also happen to be T1/hyperinsulinemic, which causes a few headaches with my cardio. But we get there eventually.

If you ever have any questions, I am happy to help, because even though I am not a parent, you have my full support and sympathy in this difficult time.

BIG hug to everyone, and hope everything is well for you from now on!

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