Faces of PKS
"We don't believe your fetus is viable ... you need to seriously consider terminating the pregnancy. You need to prepare yourselves to pick out a name and a burial plot... "
This is what we heard when we were given the results of an amniocentesis at 36 weeks in early October 1995. We were informed that our child had a genetic defect - Pallister-Killian Syndrome Tetrasomy 12p. We remember hearing that our child was most likely malformed with a diaphragmatic hernia and had zero chance of surviving childbirth. We were shown every conceivable worst case scenario for the information available back then, quoted the "challenged" infant mortality rate, given the impossible odds for raising such a child, warned of the unbearable emotional and financial burden we would face along with the dire prediction that we would be ostracized by family and friends if we chose "... to have this child."
Two weeks later, at 9:39 AM Ricky arrived via cesarean section. Four weeks later he was rushed to the ER with vomiting and high fever ... he had bacterial meningitis. There were no veins available that could withstand the long term IV use required to administer the antibiotics. Ricky needed an operation to insert a broviac catheter in order to receive the antibiotics, but the Doctors hit a wall because his esophagomalacia was preventing any intubation. A specialist was rushed in with the hope that he could solve the dilemma and save Ricky's life...
.... now here we are 2 months away from Ricky's 18th birthday and his life has been remarkable. Yes, there were plenty of tough times - surviving a dozen aspiration pneumonias because his epiglottis doesn't close quite right; the onset of seizures in the middle of his sixth year; dental reconstructive surgeries every two years from his eighth birthday on; biannual fittings for a soft Boston back brace to deter the kyphosis from accelerating; most recently a bronchoscopy was performed to find out why extubations have been so difficult - he has an oval shaped esophagus; and yet with all of that going on, his life experiences are enviable.
Ricky is quick to smile, loves his music and has a belly laugh that is most contagious. Best of all, he loves to travel. He flew to Las Vegas to see his sister get married in the landmark Little White Chapel right on the strip; his next flight was to San Diego for his oldest brother's wedding at sunset on the Pacific coastline; 8 months later he was off to San Francisco for his older brother's wedding with the promise of a cable car ride. (We live in Pennsylvania). He flew to the Big Island of Hawaii and saw the black sands first hand before heading over to Maui to show off his charms to the local ladies at the Luau in Lahaina.
He has vacationed a half dozen times in the Outer Banks, visited the Pocono's and Williamsburg Virginia and most recently added Virginia Beach to his vacation repertoire. However, one of his most exciting excursions was to the capitol building in Harrisburg where Ricky was both witness and participant for the passing of State Resolution 252* recognizing December 4th as Pallister-Killian Awareness Day. Ricky was seated directly on the Senate floor to the immediate right of the podium as the resolution was presented, voted on and passed. (Check out the pictures on Senator Greenleaf's website.)Ricky 17th birthday highlight was a solo ride in a hot Red Corvette with the top down of course, coordinated by his Aunt Betty and driven by his Uncle Drew. His Godfather never misses his birthday and his Godmother calls him every week. His grandmother keeps him in her daily prayers and his nieces and nephews all enjoy playing alongside Uncle Ricky. His cousins from Sicily visited last year and now they want him to come out for a visit. If we can work out the logistics ... maybe a cruise for his 20th birthday is the way to make it happen!
From the moment Ricky was born, we promised ourselves that we would let Ricky live his life to the fullest - no expectations and without limitations. We wouldn't decide for him what he could or couldn't do and not let him try because of it. He continues to amaze us with his zest for life and although he has never spoken a word, he can look right into your heart to let you know "I love you". We are glad we listened to our hearts and chose to give Ricky life.
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