When your child is sick, sometimes all you can do is cry

Oliver was 7 days old and weighed less than 800 g when I learned he had congenital heart disease.

It was a heart murmur that prompted the echo (ultrasound of the heart), although he would have had an echo anyway, given his birth weight. The echo confirmed he had a patent ductus arteriosus (PDA), a common problem for babies who weigh less than 1,000 g. A common and fixable cause of a heart murmur. He received the drug indomethacin, but his murmur never went away.

So he had another echo. The good news was his PDA was closed. The bad news was he had stenosis (narrowing) of his pulmonary valve (so he wasn’t pumping enough blood to his lungs). He also had a hole between the top two chambers of his heart, called an atrial septal defect.

I was in shock. My first thought was, he had 2 echos before birth and one last week and you are just picking this us now? I was prepared for a lot of things to go south, but because his heart had been looked at so many times, I kind of assumed that was the one organ we could count on. My rational self knew these scans are very hard to do on such tiny babies, but when it’s your baby in the NICU, you are not rational. And you are most definitely not yourself.

I knew a lot of congenital heart lesions could be observed, but Oliver was in the 25% who needed intervention. The hole could wait. The narrow valve could not. The problem? He was too small and fragile for surgery.

The only thing worse than hearing your child has a serious medical problem that needs surgery is hearing that they are too sick to have the procedure.

And that is when I laughed. Yes. One of the crazy, maniacal Frankenstein laughs. I mean, really. How much bad news can one person take?

I’m pretty sure I scared the neonatologist and the nurses. I sat by Oliver’s incubator and eventually it all sank in. And then I cried. Those big, endless heaving sobs that just keep coming and coming, like endless waves crashing on the shore.

Because at that point I wasn’t just crying about Oliver’s heart.

I was crying about rupturing my membranes at 22 1/2 weeks.

I was crying about losing my son.

I was crying about needing to be delivered at 26 weeks.

I was crying because my boys were in such precarious health.

I was crying because I felt sick as shit, as I had not yet recovered from my infection.

I was crying about the way they try to sell you crap at the crematorium (which totally sucks, by the way).

I was crying about Oliver’s heart and for my own heart, which was shattered, not broken.

I was crying because I had been through just about every horrible thing a mother can possibly take, but it was as if the devil himself were beckoning with a crooked finger, “Not so fast, my dear. I have more in my goody bag for you.”

Sometimes all you can do is cry.

And that’s okay.

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One Response to When your child is sick, sometimes all you can do is cry

  1. Randall Griffith says:

    So brave and honest.

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