Greetings. My name is Bruce Wasson. My wife Lisa and I are the proud parents of a wonderful little boy with the diagnosis of RTS named Daniel, and his little sister Emily. Daniel was born in 1994. Emily was born in 1998. Lisa and I have been married since 1983. We live in California. I am a consulting director for Proxicom. Lisa is a buyer for Miller's Outpost.
Anyway, on to Daniel. I am reminded of the mother of a child with RTS in New Orleans who saw our names on one of Lori Baxter's lists of parents in the RTS parent's group. From the list she saw that Daniel was less than a year old, so she called us just to let some strangers know that things really get a lot better after the first year. I can't tell you how much that phone call meant to us, or how true her words were in our case. In the spirit of that mom's call, please read on.
Daniel is now in great shape. He's a joy to everyone he comes in contact with, a real charmer with that classic big smile of an RTS child and a big interest in anyone (and anything) that comes into his field of vision. He loves to give hugs. So long as he's fed, not totally wet, and doesn't have a cold, he is a very happy, inquisitive, (and we think really, really cute) little guy.
As is probably the case for most parents of a child with RTS who is older than Daniel, this glowing report was not always the case with him. He was born with what we were told were at least 4 major heart defects - patent ductus, pulmonary stenosis, aortic stenosis, a coarc of the aorta that later proved to be a false or "pseudo" coarc, and a small hole somewhere on his heart that I have largely forgotten about because it ended up being very trivial. Anyway, he spent his first month of life in a Neonatal Intensive Care (NICU). In NICU and throughout his first year, he usually became exhausted after sucking 3 or so drags on his bottle. Breast feeding was out of the question. After the 3rd week in NICU we gave up and had a g-tube put in.
As usual, reflux was a big problem that first year. Mommy and Daddy didn't know when to stop feeding this little guy who wouldn't grow! Daniel also has the usual big haluxes (sp?) and thumbs associated with RTS.
On a first impression basis, Daniel's most prominent anomaly has continued to be the opacity (cloudiness) in his right eye. This congenital defect has been diagnosed as Peter's Anomaly. His left eye has tested perfect. Daniel had heart surgery to close the patent ductus at 1 yr of age. In addition to his rapid healing from the ligation of what was the largest patent ductus the UCLA heart/lung transplant program chief had ever seen, we were all very blessed to have had the more serious aortic and pulmonary stenoses quickly diminish to a level that has required no surgery and absolutely no limits ion his very active little life. When it came time to remove Daniel's g-tube, we were told to expect a 6 month or more transition period to oral feeding. Daniel went 100% oral in about 8 weeks. Daniel also had surgery to open up a blocked tear duct in his right eye at around 2.5 yrs. This surgery failed at first but amazingly began working after about a month. So Daniel has done very well. This could be due to statistical chance. But not being interested in leaving anything up to that, we have also had a lot of people praying very hard for him for a long time now. We have also used the PPO plan we are in to edit the list of specialists who can see him. (PPO is a type of health care in the United States - it often provides the greatest choice, but often at a greater cost). During Daniel's first year, we released more clinicians than we retained.
Daniel also has the typical cognitive and speech delays. He was tested for a public school Individual Education Plan (IEP) development at age 39 months using the Bailey, HELP, and Reel tests, supplemented by parental and school observations. The outcome of this assessment battery was that Daniel tested at a chronological age of around 18 months on most of the things they were able to test, and around 11 months on speech. Regarding speech, Daniel has made some interesting sounds with increasing variety, but no words as of yet. When he is not at his full-inclusion preschool program for 3-5 yr olds, he is cared for in our home during the day by God's gift to day care, who speaks to him in both Spanish and English. Lisa and I decided that the likely added delay a bilingual environment will put on him will be worth the wait when he's older. Daniel shows good understanding of many words in context, both English and Spanish. Like most children diagnosed with RTS, Daniel is also relatively small. His sense of balance appears to be delayed also. But he is undeterred. To our knowledge, Daniel has none of the other conditions that are typical for RTS. Due to his positive approach to his surroundings and other people, we believe he will do just fine in the long run.