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A different side of me.

December 11, 2012

Most of you don’t know that I have children.  Three little girls.  I had a health scare with my second, Sarah.  I wrote a little essay about the experience.  I’m posting it here.  Just so you know I’ve been there.

Our daughter Sarah came fast.  I hung around at home in labor until I practically delivered in the car on the way to the hospital.  She shot out limp and blue.  “She’s a little stunned.  We’ll keep an eye on her” they said. Of course she was fine.  As an “elderly mother” at 41 years old I had had ultrasounds once a week for months.  Everything was fine, no problems, baby looked great.  She must be fine.  6 hours after birth Sarah was in the NICU at Children’s Hospital Boston.

She had what is known as a congenital diaphragmatic hernia or CDH.  A hole in her diaphragm through which her bowel escaped up into her chest, crushing the new lung.  I was told it was “a small hole”.  I’m a doctor.  I saw the x-ray.  I cried.

To have a child in the hospital is a little like being Alice through the rabbit hole, but without the clever rhymes and cute cats.  My whole life contracted in those days into a hospital room, a heart rate monitor, the quest for calories, for weight.  Sarah couldn’t eat; neither could I.  Sarah didn’t sleep; neither did I.  Sarah didn’t gain weight; I despaired.  I have an older child I didn’t see and couldn’t care for.  I have a husband I couldn’t care for either, though he needed it.

Sarah had thoracic surgery at age 3 days.  She came out on a ventilator with a chest tube, a tiny catheter in an artery in her wrist and an IV in her saphenous vein. To hold her required that you also hold the drains, the tubes, the monitor lines.  I wanted to hold her as much as possible.

I became a tiger mother.  I fought at every turn.  I knew the system and I worked it.  I stalked the doctors, paged surgeons, harassed nurses and ignored interns.  I called in every favor and used every contact.  I was there for rounds at 5 AM.  I was there for every weight measurement.  I carried her to X-ray.  I was there when they put the feeding tube in.  I was there when they added oxygen, when they hung her intravenous nutrition, when the women’s auxiliary gave her a crocheted blanket in a hundred colors.  I pushed for results, for progress.  The residents were afraid of me.  I think some of the senior doctors were too.

I finally took Sarah home.  She came home with a feeding tube and oxygen.  That’s what I agreed to, to get her home.  I’ll do anything, I said.

My story has a happy ending.  Sarah thrived. I am lucky.  And changed.  Mothers we are strong.  We can be sweet and loving but facing threat we become like animals, fierce and protective, focused and obsessed.  Hear me roar?  You better believe it.

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From → Healthcare

2 Comments
  1. Fine blog, and interesting post. The key to this story is ” I knew the system and I worked it.” As you very well know, most patients don’t know the system well enough to work it as you did. Some do. And, even those who do know the system don’t necessarily know the medical language or the science behind it. And there is such a thing as professional courtesy. It exists in every profession. Once they know you’re a nurse or doctor, that very well affect your treatment. So I don’t necessarily think this is about strong mothers, although I’m all in favor of strong patients who advocate for themselves and their loved ones. This is about being an insider scientifically and system-wise. Knowing which buttons to push and knowing the medical science is the key here. Anyway, enjoy your blog and the reprints on KevinMD.

    • Thanks for the comment Doug. I agree that I had a major advantage. Part of the reason I wrote the post is because most people DONT have my advantage, and their experience must be so much more frustrating than mine. Some of my other posts seek to give a little of my knowledge to those who don’t have it.

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