Grieving Grammie: Heart Letter to Washington

There will soon be a documentary on PBS for CHD and they are willing to take our letters to Washington to see if we can get awareness for CHD.

Here is my letter - (Pictures aren't all happy ones) The letter printed better

Gracie Lou Lavoie

Born – December 19, 2008

All seemed perfect that day! This beautiful child entered our lives and hearts forever.

We were told she was perfect, everything was fine. Even though she was breathing and sounding congested, we were told she was fine. Her 2 week checkup we were told he was fine – she was perfect.

February, 4, 2009 – she became very congested and wouldn’t eat. She was taken ito the E.R. and admitted for RSV. She was intubated to help her breathe because she could no longer do it all by herself. For the next 17 days she was in ICU in a coma and we waited hour by hour to see if she would survive. Every day they took x-rays and monitored her – finally she turned the corner and began to recover.

She had a hard time holding her oxygen levels for several days after being moved to regular care and we were told she was fine – she would recover fully – nothing else wrong and she went home 22 days later. She was perfect.

Three and half weeks later she seemed to have some breathing issues again and she was rushed back to the hospital and she was tested for RSV and it was negative. They said don’t worry – she is fine, give breathing treatments if you feel she needs them. She is perfect.

Then at 4 ½ months, at a check up, they discovered a heart murmur and low oxygen levels and she was rushed back to the hospital and they couldn’t understand what was wrong. Finally they did an echogram and discovered she had two holes in heart (ASD) a was missing her right pulmonary artery, pulmonary stenosis in her left lung and pulmonary hypertension – she was rushed down to U of M - Mott Children’s hospital . She was born we these defects – her heart and lungs were NEVER perfect and it went totally undiagnosed until it was too late

This was the LAST day we saw her awake, smiling and laughing and we prayed that her heart & lungs could be made perfect.

Why is CHD awareness important?

So NO parent, grandparent, brother or sister have to see their loved one like this.

So they don’t have to be told there is no hope.

So parents aren’t being asked to make impossible decisions that mean life & death for their child.

So they don’t have to be told it’s too late – maybe if it had been discovered sooner.

So all medical professionals are trained on what to look for - CHD is the #1 Birth Defect and the medical profession isn’t aware enough to know what to look for!
So beautiful , innocent children have a chance to live the life they deserve.

So families never have to say good-bye this way