Margaret “Maggie” Churchall Stewart was born on January 15, 2000, 6 pounds 14 ounces, in St. Louis, MO. She is the sweetest baby, has a great smile and keeps her Mom & Dad on their toes! 

Our Story:

I (Maggie’s Mom, Meghan) had a normal pregnancy and was unaware of any problems until she was born. Shortly after Maggie was born she exhibited some problems breathing and was intubated for about 12 hours.  The respiratory problems seem to work themselves out and it turned out to be nothing.  But, because of her difficulties the first few hours of life, Maggie was then checked over (with a fine tooth comb) by the Neonatologists at the hospital.   They suspected RTS and the next day the diagnosis was confirmed by a Geneticist. Like other RTS parents we had never heard of Rubinstein-Taybi Syndrome and were surprised (for lack of a better word).

Maggie is 9 months old as her Mom is writing this.  So far we have been pretty lucky medically.  Maggie had lots of trouble gaining weight in the beginning but seems to have gotten over at that hurdle.  She weighs 13 ½ lbs at 9 months.  We feed her high calorie formula and she has really taken to the pureed baby foods!  Banana’s and sweet potatoes seem to be her favorites.   Maggie’s biggest challenge right now is that she aspirates her fluids when she drinks.  Because the liquid enters her lungs, she has developed pneumonia and been hospitalized twice.  We now used “Thick It” in her formula  and that seems to be working. Maggie also had Strabismus and is far sighted.  We have surgery scheduled to correct the Strabismus in a month.  She has a small PDA and VSD, but nothing to be concerned about in the immediate future.  Her thumbs are broad but not angulated and do not require surgery. 

We have a great team of Therapists following Maggie (DT, PT, OT, ST).   They are an amazing group of individuals and our whole family is lucky to have them in our lives.   Maggie is also followed by Cardiology, Ophthalmology, Genetics, not to mention the worlds most patient Pediatrician.   

Maggie is a wonderful, smiley, funny little girl – special in every way.  We are so thankful for all her accomplishments and that she joined our family.  Her extended family, including 6 grandparents, is loving and supportive. She has 1 uncle, 3 aunts, an amazing Auntie Godmother that loves to buy baby clothes (yes!) and a sweet Godfather that is expecting his own baby shortly.  She doesn’t have any siblings yet, but maybe in a few years!