James, born 2001
"There's a baby with Downs Syndrome and heart defects". The call came out of the blue, after we had adopted Terry six years ago (who has multiple medical, physical and cognitive disabilities). "His name is James. He's been in foster care for three months with a private adoption agency. The planned placement fell through when he was born with medical problems. Do you want him?"
Yes! We wanted James then, we want him now and we want him forever more.
NOVEMBER 2001: We only had James for a little over two months when it was time for his Tetralogy of Fallot repair. The surgery went well, but he had complications during his recovery which necessitated him being reintubated and put back into a medically controlled coma and on life support for another four days. It seemed an eternity but when he recovered, we figured we were home free.
JANUARY 2002: Two months later, we began a terrifying downward spiral. James was admitted into a local hospital with what was first diagnosed as pneumonia. That changed to collapsed lung tissue, Pulmonary Stenosis, pulmonary valve failure, two VSDs (where his new patch had ripped away) and congestive heart failure. After two weeks in the hospital James was deteriorating, not improving. When he lost two pounds, developed diarrhea, another respiratory infection and had an episode of non-responsiveness, he was ambulanced to a Boston Hospital for ICU admit. We were told he needed another open-heart surgery to survive, but that he would need to get stronger to improve his odds of surviving the surgery. A roller coaster ride followed.
FEBRUARY 2002: James stabilized and came home with VNA (visiting nurses) care.
MARCH 2002: James was re-admitted and then discharged with a NG tube and VNA care.
APRIL 2002: James was admitted and then discharged with oxygen, NG tube and VNA care.
MAY 2002: James went in for a cardiac catheterization and his pulmonary artery pressures showed he needed the open-heart surgery ASAP. Waiting was no longer an option.
JUNE 2002: James' new pulmonary valve arrived and he underwent his second open-heart surgery to replace the valve, close the VSDs and augment the right pulmonary artery with another patch. His recovery was quick and perfect and he has not needed the extra oxygen or feeding tube since.
Since then, James has taken medication to strengthen and regulate his heartbeat and has had a cardiac catheterization to enlarge his left PA (pulmonary artery). He will need more caths and repeated open-heart surgeries in the future but right now JAMES IS DOING GREAT. Because of his Downs Syndrome, James has also needed eye, nose, GI and bronchial surgeries and he has developed problems with his thyroid and trachea which, unfortunately, will complicate his future heart surgeries. All this and yet he laughs, runs, climbs, eats, plays, talks a little more each and day and gives out many, many hugs and kisses. Yes, we want him.
Story by James' mom, Abigail - Massachusetts