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In the hospital

We got some very good advise at the Alajuela Hospital.  First, one of the neonatologists, Yolanda Salinas, told us on the first day,

You are now on a path where you will be meeting lots of people who will tell you lots of things.  Remember that currently we know almost nothing about the brain, and very little about infants.  About infant brain injury we know almost nothing.  All I know is that most babies I see who go through this don’t live,  but some grow up to be normal, and no one knows why.  You will just have to try everything you can and hope.

Her advise was helpful in calming us when experts contradicted each other and when doctorss advised us that Miri would die, and there was no use loving her too much.  We later learned that after your baby dies, you don’t regret having loved her.  At least we didn’t.

A nurse at the same hospital gave us this advice:

Remember when you care for her that more than anything, she is a baby, and mostly what she is doing at any moment, and what she needs at any moment is just the same as any baby—warmth, a clean diaper, food, a smile, to be held. Don’t forget the basic things.

Her advise was helpful when professionals, who may not have known what else to say, and hadn’t spent much time with normal babies, told us, “See how she does X?  That’s evidence of profound injury.”  And then our friend’s baby of the same age visited and did exactly the same thing.  Or we started wondering if our son had some problem, since he did many of those kinds of things as a baby.

 

An anonymous neonatologist from the States sent us this message, via a friend who had worked as a nurse with him,

Tell them to get her out of the hospital as soon as possible and keep her out.  Newborns with brain injury do better at home.

 

He was right.  We wish we had followed his advise more faithfully, as well as the advise of friends who told us,

As her parents, you know better than anyone else what she needs, so don’t let anyone else make decisions for you.

 

It is impossible for a hospital doctor, who has such limited time with your baby, to offer you anything but a wild guess.  One of the best doctors, Sharon McDonough-Means, one of the very few doctors who actually helped, spent three hours listening to us, and asking us questions.  Then she made a small suggestion that really improved Miriam’s life, and was based on something we already knew (that she was allergic to the formula the hospital had prescribed).  Mark Vonnegut, MD, writes about this phenomenon in his memoir: that he learned from the old doctors that if you let patients talk long enough they will tell you what they have and what they need.  Unfortunately hospital doctors are not currently allowed enough time with patients to learn much from them.