Our Amazing Children
July 27, 1999
Dear Parents and Friends of the Heart,
I have to agree with Olivia's mom (sorry, I didn't see your name on your
post!) when it comes to having children who totally amaze us.
Alexander's diaphragm was partially paralyed after his fenestrated Fontan and
his vocal cords were totally paralyzed. He went into the surgery saying
"mama" and a lot of other words, but he came out speechless. And he remained
that way for months. First we had to wait to see if his diaphragm would
start working again. The doctors told us they could start working on their
own in days, weeks, months or even a year! Or his diaphragm might never work
properly again.
They, of course, did not paint a promising picture. They sent me home with
an oxygen tank and an appointment on the calendar. At home we were greeted
by an oxygen concentrator and a 35-foot nasal canula.
Alexander was amazing. In spite of everything, he still smiled. What a
precious angel he was. For many days he opened his mouth to cry or "talk"
but nothing came out. It was heart breaking.
When we went in for our PC visit a month after we had been sent home,
Alexander's diaphragm had made noticeable improvement. We were able to
dispense with the oxygen tank (thank heavens!) and now we had to wait to see
if the damage to his vocal cords would be permanent.
For two months I did not hear a thing from Alex. It hurt so badly to see him
cry, real tears trickling down his face, but not a sound one. I wanted so
badly to hear his sweet baby voice. I wanted so badly for him to say
"mama"--or even "dada"! Any sound, I believed, would be welcome.
Then it came. The tiniest, little kitten's mew came out of Alex when he
cried. That is the closest I can come to describing how it sounded. It
sounded so strange, so not human, that I was frightened. All of a sudden,
the silence seemed preferable. My baby sounded like a little kitten almost
too weak to cry. Could this really be my Alexander?
Days passed and I worked with Alexander. My bachelor's degree is in speech
pathology, so I had a distinct advantage. I went back and read some of my
old college textbooks. I found little to really help me. Instead, Joey and
I treated Alexander as normally as possible. I encouraged Joey to model good
speech for his little brother. And I tried to get Alex to speak, too. To my
great distress, after Alex stopped sounding like a kitten, all he could say
was "uh."
It wasn't the voice of my sweet pre-Fontan baby either. This voice was low
and husky, and often aphonic (air came out but no sound). How could that
voice belong to such a young child?
Well, Alex is now four years post-op. His voice is still husky and low (in
pitch), but it is intelligible. It is also loud enough to be heard.
Sometimes too loud (although I still find it hard at times to ask him to
"tone it down" because I remember those other days so clearly).
I ended up supplementing Alex's communication with sign language. Somehow
that unlocked the voice within him. When I think of the full-blown temper
tantrums my two-year-old child had, I am amazed at how far Alex has come. He
was so frustrated and unhappy that he could not be understood. Sign language
changed his world into one where he once again had some power. Now he almost
never signs, except to say "I love you."
Hang in there, Lisa. We do go through some rough times, but the struggle is
worth it. Our children are amazing. They are warriors. They are angels.
And we are so very blessed to witness their special lives.
Take care!
Sincerely,
Anna Jaworski
mom to Joey (HH; almost 8) and Alex (HLHS; almost 5)
author of
"Hypoplastic Left Heart Syndrome: A Handbook for Parents"
and
"My Brother Needs an Operation
" and editor of
"The Heart of a Mother"
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