2024-03-14 05:00:55
Trapped intestine, distended abdomen and green vomit were the first signs that Helena Delmondes’ health was not good. At the age of 4, the Brasilia native was diagnosed with short bowel syndrome.
The condition meant that the girl, her parents and her brother needed to move to Porto Alegre, in the first year of the Covid-19 pandemic, in search of adequate treatment.
“One day we were playing and she vomited green. The tests showed that my daughter’s intestine was completely twisted. When Helena arrived at the surgical center, the organ practically no longer worked”, says professor Sandra Delmondes, Helena’s mother.
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Short bowel syndrome is a rare, serious and debilitating condition. It can be caused by the surgical removal of a large part of the small intestine or by other diseases that affect the organ, such as Apple Peel syndrome, which was the girl’s case.
Patients with a short intestine are highly prone to developing malnutrition due to other health complications such as diarrhea, dehydration, electrolyte disorders and poor nutrient absorption.
After the diagnosis, the little patient underwent surgery to restore bowel function. And, soon after, came a new scare. In considerable pain after the procedure, the girl started vomiting blood. The doctors explained to the teacher that one of the stitches had broken, causing a hemorrhage.
“The doctor ran into the room, saying that she would have to go back to the operating room and said ‘say goodbye to your daughter’. We were devastated. At this point, 80% of her intestine was necrotic,” she recalls.
Helena Delmondes – SHORT BOWEL SYNDROME 02
Helena’s family moved to Porto Alegre Sandra Delmondes/ Image provided to Metrópoles
Helena Delmondes – SHORT BOWEL SYNDROME 01
Helena has undergone 12 surgeries in the last four years Sandra Delmondes/ Image provided to Metrópoles
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Helena needed to stay in an induced coma for days so that surgeons could apply daily dressings to her intestine and observe the organ’s response. On the eighth day, the organ started working again, but feces fell throughout the abdominal cavity, causing the girl to go into septic shock.
The girl then had to return to the operating room to wash her abdominal cavity. According to Sandra, every seven days, the girl had a new complication, which led to severe malnutrition.
“The doctors said there wasn’t much that could be done. Every day they advised me ‘say goodbye to your daughter because we don’t know what tomorrow will be like’. I had to say goodbye to Helena a few times in the ICU. In less than two months, there were seven surgeries, one more serious than the other. There are 12, over the last four years”, says the mother.
Bowel rehabilitation
In June 2020, Helena underwent decisive surgery so that doctors could try to save her intestine. Although the objective was to recover at least 70 centimeters of the organ, only 25 cm were in good condition.
Rehabilitation treatment included the strategy of parenteral nutrition, when the patient receives nutrients via catheter. The limited availability of a rehabilitation center in the Federal District, which would allow hospital discharge to live at home while undergoing treatment, led the family to move to Porto Alegre.
“I didn’t know anyone in Porto Alegre, but I wanted my daughter to have the same right as her brother, to have a healthy life and not be restricted to a life in the hospital”, says Sandra.
Helena was treated at Hospital Moinhos de Vento, where her parents were trained to provide parenteral nutrition and dressings following all hygiene protocols, a requirement so that the girl did not need to live in the health unit.
The family’s commitment guaranteed Helena a normal life: she attended school, walked in parks and had the same diet as her brother. The evolution was so good that it was possible to reduce feeding via catheter to twice a week.
Treatment with medicine
During the same period, the National Health Surveillance Agency (Anvisa) approved the use of Revestive in the country. The medication is indicated for the treatment of patients aged 1 year or older with short bowel syndrome who are dependent on parenteral support.
The treatment improves the absorption capacity of the intestine, meaning that patients do not need to receive nutrients via a catheter. In March 2023, with the use of the medicine, Helena was released from parenteral nutrition.
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“It was a victory. The whole process was very painful and Helena is managing to gain weight and make a very good progress just with the support of the medication”, says Sandra. The family returned to Brasília in January this year.
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