Marchese Family: Shunt Info

Gavin was born in January 2010, a seemingly healthy 6+ pound baby boy. He took us by surprise a bit, as we had only been on the "waiting list" for 2 weeks! Gavin had rough beginnings- formula allergies, chronic fussiness, frequent ear infections, and finally diagnoses: Cerebral Palsy, Eosinophilic Esophagitis, and severe Sensory Processing Disorder. You'd never know these days! He's symptom free of CP and in remission of EoE! His SPD continues to give us a wild ride, but there's no sweeter boy than mine to make the journey with!

Special Needs Thoughts...

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

-Emily Perl Kinglsey

Friday, January 2, 2009

Shunt Info

I just got the call that she's going in for her CT scan now! Here's some info about the surgery that will take place: (this will be the 1st surgery- a temporary fix until the corrective surgery can be performed)

The Blalock-Taussig shunt is a surgical procedure to give palliation to cyanotic heart defects which are common causes of blue baby syndrome. In modern surgery, this procedure is temporarily used to direct blood flow to the lungs and relieve cyanosis while the infant is waiting for corrective surgery.

One branch of the subclavian artery or carotid artery is separated and connected with the pulmonary artery. The lung receives more blood with low oxygenation from the body. The first area of application was tetralogy of Fallot.

The procedure is no longer in use in its original form. Now a length of artificial tubing, 3 to 4 millimeters in diameter, is sewn between either the subclavian or the carotid artery and the corresponding side branch of the pulmonary artery, thus obviating the need to cut off blood supply and making it easier to regulate the blood flow to the lungs. Some centers now use a shunt directly from the right ventricle to the pulmonary artery, a Sano shunt. This is done to avoid the reduced diastolic blood flow in the coronary circulation associated with the Blalock-Taussig shunt.

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