Tracheoesophageal Fistula and Esophageal Atresia
You cannot imagine
how grateful I was when I received your letter. Thank you so much for all the information. She is better now, and I can only pray that she will stay this way. The
specialist that did the dilations told me that, MAYBE, it wouldn't be necessary for future dilations, but he can only tell me in two months time. Now for your questions:
I am married, and I was 27 when she was born. My husband is 46 years old. We have a three year old boy who is perfectly normal. My husband does not really seem interested. We do not communicate
that well on this subject. He is quite distant, and I sometimes feel that I am on my own in this battle. Maybe he blames me, although he doesn't say it. I don't know.
When I was pregnant with Carmen, I had quite a lot of ultrasounds, but nothing was diagnosed until she was born; actually, a day after she was born. I had a lot of amniotic fluid, which she swallowed, and at that
stage went straight to her lungs. She was born with a tracheoesophageal fistula with esophageal atresia. She also had pneumonia due to the fact that she swallowed such a lot of amniotic
fluid. Her saturation was also very low (that means the amount of oxygen she had in her blood). The pediatrician tried to suction her stomach, as she believed that the fluids had gone to Carmen's
stomach. It was only the next day when the nurse took x-rays with the suction tube still in place that she noticed the tube turning back towards the mouth. The esophagus ended in a pouch. Luckily, the
gap between the two ends wasn't that big, so with surgery it was possible to join both ends together. She had a feeding tube through her nose that went into her stomach
while in the neonatal ward after the surgery. I used to express milk and bring it to the hospital at every feed. She was connected to a ventilator
and had a draining pipe in her right lung. The wound also went septic, so the doctors had to do a secondary stitch. She does not have a gastrostomy tube, and suckles well. She has very little difficulty
swallowing but has significant gastroesophageal reflux. For this problem she has medication to help the food move down the esophagus and empty out of the stomach quicker. I have started
introducing solids, but then she also has a severe "roaring" sound. We still do not know what causes this sound (It's the same sound she has when she has a lot of mucous). Doctors cannot give me an answer to
this. They just say that it is not supposed to happen. Sometimes I really think one's gut feeling and sixth sense, or intuition, is far better than some doctors' advice. The specialist that did the
surgery told me that the peristaltic movement of the esophagus is not functioning well, and that this may be the cause. Furthermore, she has thirteen pairs of ribs on both sides but no other
dysfunctions or anomalies that I know of. She has got both her front teeth in the upper and lower jaw. There seems to be no abnormality at this stage.
By the way, she weighed 3.6 kilograms at birth and stands now at 7.5 kilograms. It seems to me that some dysfunctions only become apparent at a later stage. She is 6 ˝ months old now.
Thank you so much for the wonderful work you're doing. Petra Steyn
We didn't have a very good
December since my daughter Carmen, had a lot of phlegm and mucous, which had to be suctioned physiotherapist, for fear that she may drown in her own mucous or that it would form a plug. She was really
bad and four different courses of antibiotics as well as cortisone to clear all of this. None of this actually helped. Our physiotherapist advised me to change her formula. She was
on Pelargon, so I changed to Isomil. She has been tested for food allergies, but the results were negative. At first it didn't seem to have any major effect, but after nearly three weeks on it, she suddenly didn't
have that terrible roaring sound (as I call it) whenever she breathed. We still are not 100% sure that it is the formula, but I sure hope so. She had her sixth dilation on the 11th
of this month. It had to be postponed due to the fact that she had such a lot of mucous.
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