Without the doctors having found the cause, this girl from Madrid has refused food until she was six years old, despite therapies and various medical and family attempts
Daniela she is a six-year-old girl like any other her age. She is tall, thin, with long hair and a fondness for playing with her toy kitchen and feeding her dolls. But she hides a secret in her belly: a gastric button through which she has been fed since she was a year and a half. And before that she had a nasogastric tube, of those that go from the nose to the stomach, with whom he lived for 10 months. These gadgets have been the only way for Daniela to grow and develop according to her age. Because she, without any clear cause, began to refuse breastfeeding after two months and, later, any food. The hungry has not been part of her life and getting her to start eating by herself, three months ago and already six years old, has been a obstacle race for her, her family and the team of the eating disorders unit of the Niño Jesús Children’s Hospital in Madrid. Daniela was born completely healthy and up to two months she had a normal breastfeeding. From that date she began to eat less, in fewer feedings and, on the recommendation of the pediatrician, his parents tried to give him a bottle, but nothing, total rejection although they tried all kinds of teats and milk. And, at five months, with the introduction of purées, he also resisted the spoon. “Had have force her, cover her nose, she stirred, she vomited, she thought she was going to suffocate her, she was desperate & rdquor ;, says the mother, Eva Maroto, at her home in Alcalá de Henares (Madrid). As she was a first-time mother, the reaction of her environment was to give her constant advice, if she should give it on demand, if she should space out the feedings, if she should try this, if she should try the other. “They were complicated months, the first reaction of family and friends is that we did not know how to do it, what we did feel Eva bad mother&rdquor ;, explains the father, Juanma Martínez.
infant anorexia
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Finally, when Daniela was eight months old, they went to the hospital emergency room.baby jesus hospital with a report from the pediatrician, he was diagnosed lactating anorexia and they put a nasogastric tube in her so she wouldn’t keep losing weight. In addition, they made multitude of tests looking for the reason why Daniela refused food and they found nothing. “We think a lot of factors came together, like he doesn’t smell, he wasn’t hungry at all, he’s disgusted by many surfaces, he has great sensitivity in the mouth area to the point that kisses disgust him… Ha been like him dream cocktail& rdquor ;, summarizes the father. She spent 10 hellish months with the probe in which Eva and Juanma took care of Daniela the 24 hours to prevent the tube from being pulled out that kept her alive. For example, they dared to go to the beach when she was one year old and they had to learn how to put the tube on because in two hospitals in the Valencian Community they could not find any health professional capable of putting it on properly. “We had to take on the role of a nurse because not all places doctors are aware of this disease and treatment & rdquor ;, they explain. In November of that year they made a intensive month of therapy daily at Niño Jesús, in the eating disorders unit where speech therapists work to teach or motivate them to eat, psychologists or specialized pediatricians, but they made no progress, so in January 2017, when Daniela was a year and a half old, she they put andthe gastric button that he still carries in his gut. It is a silicone tube that ends in a kind of button that opens, which goes to the stomach and allows feeding more comfortably than with the nasogastric tube.
The difficult reconciliation
Still, life with the button has also been complicated. During her nursery years, Eva had to quit your job to go feed him by the button and return; they had to go with the “gadgets & rdquor; to excursions, holidays or birthdays… Now everything is a little easier because at school there is a nurse who takes care of Daniela’s food every day. In addition, after years without progress or small “magic moments & rdquor; in which Daniela seemed to start eating but after a few days “she returned to the same point & rdquor ;, last February this family began to see”the light at the end of the tunnel” because she began to eat “gladly & rdquor; and continuously. He still has “panic & rdquor; to some foods such as bananas, rice or soup, but he refuses to be fed through the button and if everything continues like this in summer they may take it away. It all started very slowly, since it takes six years without chewing and it costs him. She started sucking on a spoon of yogurt or eating half a chicken naget in 40 minutes. But, at last and after six long years that have surprised even the professionals of the specialized unit due to the extension and complexity, they see “the first results” explains Juanma with a smile from ear to ear.