Noah’s Journey

John and Elizabeth Tuttle had only one son. Noah was born with pneumonia and he didn’t look like other babies. His nose was thin and his ears were pointed. He was very small and he didn’t cry the way other babies do.

Noah never learned to speak in full sentences and he never grew up to find his own way in the world. He stays at home with his mother and father and spends most of his time playing quietly with his toy animal collection, his sticker books and his View Master 3-D pictures. He always seems happy and always has hugs and kisses for his parents.

A few years ago he developed pancreatitis and had to stay in the hospital for almost two weeks. He cried for his parents, who, both in their eighties, were too exhausted to stay with him in the hospital all the time.

I visited Noah on the surgical ward during that time, and I can still vividly see the image of the small, elderly-looking man with a plush zebra in bed with him, his hands without wrinkles or calluses, his face without beard growth and his eyes so deep and sad.

“You my doctor!” He smiled when he recognized me.

“How are you feeling, Noah?” I asked.

“Noah’s sick” was all he said.

“You’ll be okay soon; you’ll be home soon”, I promised.

John Tuttle is a soft-spoken man with a thick Yankee accent, who never wastes his words. He hates to take pills, and he is on several. He should be on more because his blood pressure is still too high. He blames it on stress and I agree that his plate is full. Once, about a year ago, he spoke to me of his biggest fear:

“I worry about Elizabeth’s heart and I worry about Noah. What will happen to him after we’re gone? I hate to think of him in an institution. He’s always been with us.”

A few months ago Noah suddenly gained weight. His legs swelled and he became short of breath. His chest x-ray showed only a mild enlargement of his heart, but his echocardiogram showed a severe weakness of his heart muscle and a critical aortic stenosis. The main valve of his heart was closing and choking his entire circulation.

After a few days in the hospital he was breathing comfortably again, but he was homesick and cried when his parents weren’t there.

There had been no warning. There was no heart murmur. Noah had always lived a very sedentary life. His aortic valve had calcified without causing the usual symptoms until he became short of breath just playing in his room.

The chief of cardiology, Dr. Thomas Wentworth, said that an aortic valve replacement could be done, but because Noah’s heart was so weak there was little hope that it would recover. It was not likely his symptoms would go away by just replacing the valve.

I met with John and Elizabeth shortly thereafter. They had made up their minds not to put Noah through open-heart surgery with such an uncertain outcome. They wanted us to manage Noah’s heart failure with medications.

Noah is out of the hospital. He takes several new medications and is breathing comfortably. Noah talks about not liking the hospital. He stays at home with his mother and father and spends most of his time playing quietly with his toy animal collection, his sticker books and his View Master 3-D pictures. He always seems happy and always has hugs and kisses for his parents. 

John and Elizabeth wonder quietly whose journey will end first.

1 Response to “Noah’s Journey”


  1. 1 Rhonda February 22, 2010 at 3:38 pm

    This is one of the biggest worries for us parents of children with special needs. Thank you for sharing their story. God bless them!


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