Children with valve defects face a lifetime of open heart surgeries - including three or more operations before high school graduation to repeatedly replace the tissue.
"This is a major limitation to our ability to provide ideal quality of life for children with these defects," said (Dr. Frank) Hanley, who is executive director of the Children's Heart Center at Lucile Packard Children's Hospital in Palo Alto.
"It would make a dramatic difference in these children's lives if they could get one operation as a newborn and it would last forever."Read more: http://www.sfgate.com/cgi-bin/article.cgi?f=%2Fc%2Fa%2F2010%2F06%2F01%2FMNP41DMBUQ.DTL#ixzz0pdUgUFg5
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2 weeks before he was born ~ we did not know of his defect until he was 4 days old
4lbs 1oz ~ born at 32 weeks
"Unifocalization" ~ 9 hours by Dr. Frank Hanley
Chest was open for 4 days ~ hence the gauze on top
Still on a ventilator (remained on vent for another few weeks)
Mask would assist him to breathe in and out
Waiting for the surgery team to take him off
And still he smiles...
Happy day ~ Look no oxygen!
So much to be thankful for!
One boy's long road to recovery. Matthew was born two months premature with a rare fourfold heart defect known as Tetralogy of Fallot with Pulmonary Atresia and MAPCA's, and Ventricular Septal Defect. He's had two open heart surgeries and will need additional heart surgeries in the future. To appreciate the absolute miracle of this "3 plus million dollar boy", you'd need to look into the "Archives" beginning after his first 9 hr open heart surgery at Stanford, August 2005.
First picture
2 weeks before he was born ~ we did not know of his defect until he was 4 days old
Day of birth ~ May 10th, 2005
4lbs 1oz ~ born at 32 weeks
Day of first surgery ~ July "05
"Unifocalization" ~ 9 hours by Dr. Frank Hanley
After first surgery
Chest was open for 4 days ~ hence the gauze on top
Chest was just closed
Still on a ventilator (remained on vent for another few weeks)
BiPap mask
Mask would assist him to breathe in and out
Getting ready for second surgery
Waiting for the surgery team to take him off
After second surgery
And still he smiles...
Leaving Stanford after second surgery
Happy day ~ Look no oxygen!
Happy Days
So much to be thankful for!
To view more pictures of Matthew while at Stanford, you can expand the year of 2005 by first clicking on the arrow, then the month. He was at Stanford from July thru September of 2005. Matthew was transferred back to Sunrise hospital where he stayed until the end of October 2005.
His second open heart surgery at Stanford was March 16th of 2006.
We've been told he'll need a conduit change, on average, every three years. We are hoping technology will be on our side.
He's our amazing little soldier boy. Our miracle.
His second open heart surgery at Stanford was March 16th of 2006.
We've been told he'll need a conduit change, on average, every three years. We are hoping technology will be on our side.
He's our amazing little soldier boy. Our miracle.
3 comments:
That would be amazing for sure. Wonder if it will ever happen?
Thank you for the article! We saved our son's cord blood at the last minute because I read an article on this literally the night before he was born. He was born with ToF/PA/Mapcas, repaired at 3 mos. in Boston, but faces at least 2-3 conduit replacement surgeries. We're hoping they get this sorted by the time his last one rolls around, but not counting on it.
Wow! That would be wonderful!
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