How is Robin?

The following entries were written prior to Robin's death and were provided to answer the question that people kept asking again and again.

How is Robin?

We get asked that a lot.

Well.

She still has two heart surgeries to go.

A lot of children die between now and twelve years of age.

But, most live.

A cold or rsv could kill her.

But, probably not.

We worry about every ounce she needs to gain.

But, she has gained weight and is eating on her own (most Norwood children appear to have trouble eating on their own and have much more trouble gaining weight).

What is the future?

I don't know.

It wasn't until 1980 or 1981 that someone thought of the Norwood Procedure and even later when they thought of taking Norwood children and reconstructing them into Fontan heart children.

So, there aren't any "old" Norwood children.

But, there are "old" Fontan heart patients. "Kids" who are almost thirty and in graduate school. Young men who played first string football their senior years in high school. Young women who had children in their twenties (or earlier).

And, every time you read about a two hundred year old 250 pound turtle, you are reading about a Fontan heart in action (all of the giant turtles who live two hundred years or more naturally have Fontan hearts).

So, the Cardiologist tells us not to expect her to live to be twenty (since no Norwood child has lived that long yet -- but then the procedure isn't that old). The Thoracic Surgeon tells us to have hope (since the Fontan heart end result has worked out well for many children).

On a good day, I have a lot of hope. On a bad day, I have a lot of worry.

But, Robin is growing, not having too many bad reactions to the drugs she is on, smiles and we love her so very, very much.

And that is how she is doing.

Update added August 31, 1997 the day she died.

She had a check up August 26, 1997 and they told us that she was doing so very, very well, better than we could hope for. This morning I woke up to feed her and change her diaper and she had stopped breathing. The first responders were there within minutes and I had started CPR, but there was nothing they could do. She was so very, very cold. Robin was just over a bit of the colic, had kept everything done and was sleeping gently when I laid down.

They'll do an autopsy. Our doctor told us not to expect much. Her heart probably just quit working suddenly. Poor Win found out as she came home from work just after the ambulance arrived.

She was doing so well. I've never had a child do well after a PICU admission, and I had so much hope. Then she died anyway -- while I was sleeping in the bed right next to her crib. I'm afraid I don't have anything else I can add or say. I kept hoping she would open her eyes again and see me. How could she die after everything else?

Her death certificate states she died of a fatal arrhythmia. Her heart just became unstable. The one thing she was doing better than anything else was being incredibly stable for a Norwood child. When I read through the fatality statistics, it was the one thing hardly anyone died of (going unstable outside of a hospital).

[adrr.com (mediation)] [Ethesis] [Surviving Loss] [©1996-1999 Stephen R. Marsh All Rights Reserved] [e-mail]