Joey was born with a complex heart condition called Transposition of the Great Arteries (TGA). He was also born with an Atrial Septal Defect (ASD) and a Ventral Septal Defect (VSD), which is the only reason he could live, because it allowed some oxygenated blood to get through to his little body.
For the first year of his life, the nannies in his orphanage kept him still as much as possible. When the other babies were learning to roll over and sit up and grab toys, Joey wasn’t, because his file says that even laying him on his tummy caused him to turn blue because that activity was too hard on his heart.
Sometime when Joey was a year old, Love Without Boundaries paid for him to have a procedure done on his heart that would improve his oxygenation. Right before he had the procedure, he went into heart failure. After the procedure, he was not doing well and because they thought he wouldn’t make it, they sent him to a hospice for babies called China Little Flower (CLF). For a couple months, he still didn’t do well.
The director of CLF, Serena, said when he arrived, he couldn’t hold his head up, or sit, or anything. But THEN, she says, “he suddenly started to catch up and made incredible progress. He went from holding up his head, to sitting, and then to walking and climbing – it was pretty amazing! As we watched him progress, we contacted his orphanage to ask if they’d consider submitting his file for adoption. They did agree, and by fall of 2009 he was doing so well that he returned to his orphanage to wait for a family. I am very surprised he is still waiting for a family!”
Joey stayed at the orphanage for two years and was moved into a foster family about a year ago, and he’s now attending the local kindergarten. I’m currently waiting on a new update on him.
I have collected this information from various people who were involved in his care over the years. I talked to Love Without Boundaries about him in Jan 2012, and they agreed to get a new echo done of his heart. The results revealed:
ECG: sinus arrythmia, AVB right ventricular enlargement with myocardial strain RAE LAE
Chest X-ray: pulmonary pleonemia, enlarged heart shadow. UCG: D-TGA PS VSD ASD (Secundum) PDA after Glenn. Normal recovery after Glenn, next step requires the Fontan
This echo was reviewed by a pediatric cardiologist at Texas Children’s Hospital, and he said that it looks like Joey needs the Fontan procedure done, and that should be pretty much it for his heart.
The reason Joey has been waiting all this time, though, is because – like all kids born with complex heart conditions – his severely restricted movement before his surgery left him delayed. Serena recounted that he caught up on his first year milestones in rapid succession, but his orphanage prepared his file while he was still catching up, so they noted his delays in his adoption file.
Unfortunately, the details were poorly translated into English, so instead of “delayed,” he was labeled “mentally retarded.” This carries a *very* different connotation here in the US than it does in China. Here we interpret that to mean permanent cognitive deficits, rather than being behind on development with the capability to catch up, and THIS is why he has been waiting so very long for a family.
He is now attending a kindergarten in the neighborhood of the foster family. He is very polite. Every morning when he meets the teacher in the kindergarten, he will greet the teachers by saying “Zao Shang Hao (good morning)” or “Lao Shi Hao (hi teachers).” After school, when he is in a good mood, he will retell the activites in the kindergarten to the foster family. He also sometimes says to himself what the teacher told them to do as if he were the teacher. When his foster mom asks him to count numbers, he can count while pointing to his fingers. He is very polite and sweet. When he wants to have a share of others’ snacks, he knows to say very nice words. He is so affectionate and attractive that everyone close to him loves him. He is introverted and quite generally. He doesn’t seem to have a strong desire to display himself. He is a bit slow in movement, and may be slightly delayed in mental development. He cannot participate in very energetic activities due to his heart defect.
They did an IQ test on him at age 2.5 years old. Remember he was prevented from doing *anything* for the first year of his life, and then he had several months to recover from his operation, and *then* he started catching up. So in reality, at 2.5 years old, he’s only been up and moving and learning for about a year. Of course he wouldn’t have caught up to age level in just one year!