Hello, I would like to introduce my family, my daughter Victoria Hailey Duval, my husband Victor, and myself (Diane). Victoria was born on November 15, 1997, weighed 6lbs. 1/2 oz., was 19 1/4 inches long, and her head circumference was 15 3/8 inches. At birth she seemed virtually healthy (her Agpar scores were 7 & 9) except for the kidney problems (which we already knew about before she was born, though we thought she had two kidneys). At two days old they began to notice that she was having seizures, and this combined with her kidney problems made the doctors decide that it would be best to send her to Sacred Heart (a children's hospital in Pensacola, FL).

When Victoria arrived at Sacred Heart the neo-natologists diagnosed her with Rubinstein-Taybi Syndrome (RTS). She also has a second cousin with RTS so this was the first thing they looked at, and Victoria had some of the characteristics. She remained in Sacred Heart for nine days (she came home the day before Thanksgiving). Victoria has broad angulated thumbs, is missing her left kidney, has a small obstruction in her right ureter (has almost gone away on its own), low muscle tone (improving daily), and an angel kiss on her forehead.

At 21/2 months Victoria was again hospitalized with RSV (she caught it from her cousin who is 2 1/2 months older than her). She had a rough time with this, and would have done much better if the attending physician would have realized that her lungs were filling up with fluid instead of trying to send her home. Her pediatrician came to see her and immediately sent her back to Sacred Heart (she was there only 5 days,  they knew what they were doing). Since then she has been very healthy.

At eight months she weighs 17 1/2 lbs., is 26 1/2 inches long, and her head circumference is 17 3/4 inches. Actually, her head size has always been in a higher percental range on the ped's chart than her body(?).
 

 

In April, Victoria was evaluated at a genetics clinic where the geneticist determined that she is a "mild" case. They believe that it this is something that is running in my hubands family (although nothing has been proven yet) due to the reoccurance, and because there are some characteristics found in others in his family that are fine. Victoria rolled over at 5 months, is not yet sitting independently but is tripodding and can sit up if you just hold one hand (won't be long). She is also getting up on her hands and knees and rocking back and forth. She also says "dada" and "ma" a little, non-specifically of course. Victoria takes PT and OT twice a week for the low muscle tone and has improved dramatically in just a few months. Her therapists says "she is doing something new everytime I see her". I have to take a moment to thank God for Victoria (our little miracle) and how well she is doing, because without him nothing is possible.

Sorry to write a book...Diane

Diane, Victor, and Victoria Hailey Duval (8 mos.)

 

E-mail Address for Victor and Diane Duval: VDUVAL@email.com