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Juani Martín, 39, and Tamara Fernández, 38, are the parents of Romeo, a two-year-old Malaga boy who has Down's syndrome who has spent much of his short life in hospital. Now, the Hospital Universitario La Paz in Madrid is going to carry out tests with a view to operating on him for a serious and rare complication affecting his liver.
The call from the Madrid hospital came after Juani and Tamara asked for help in a social media video they posted on TikTok on 3 April. The parents posted another video on 30 April to thank the public and doctors for their response. "Romeo has been through a lot, my boy is a champion, a warrior," his mother said proudly.
After the video went viral and reached the whole of Spain, the Madrid hospital asked Malaga's Materno Infantil hospital to transfer Romeo's details and the case to them, according to his parents. "Children born with Down's syndrome usually have a series of pathologies; specifically, Romeo was born with heart problems," explained Juani.
They found out that their baby had Down's syndrome when Tamara was 12 weeks pregnant. "The first day we were in shock; the second, we went ahead," said Juani. Romeo underwent open heart surgery at just six months old.
In the video in which he asked for help, Juani said that Romeo was also admitted to hospital with bronchiolitis, which kept him in the Materno for 21 days, "His lungs were flooded and his liver was inflamed" and he also survived Covid-19.
The problem is that Romeo suffers from portal cavernomatosis, a condition of the portal vein, which carries blood to the liver, but when it becomes blocked it is replaced by a tortuous network of tiny blood vessels. "It was like an accordion and the blood was not circulating to the liver as it should," said Juani, who adds that last November Romeo was taken to emergencies where he underwent tests which revealed that his "haemoglobin was below the minimum".
The next day he had an endoscopy and the doctors found that he was suffering from oesophageal varices, a consequence of the problem in the portal vein. "As the blood doesn't circulate well in the liver, it looks for other ways to get out," he explained. That's when they knew that Romeo needed urgent surgery.
Then, Juani added, they called them in February and the family met with the surgeons at the Materno hospital, but they were not given a date. A surgeon explained to them that it was a very delicate operation, so that "it is about joining two different veins to divert the blood from one place to another and take pressure off the liver", the father explained in the TikTok video.
Speaking to SUR, Juani Martín said that after that meeting, they were told nothing new, so they decided to ask for help through the video they posted on 3 April. On 30 April, they found out that their message had reached Hospital La Paz which is a reference centre for this type of surgery.
The fundamental problem is that oesophageal varices could lead to "internal bleeding". "The video went viral: all we wanted was for it to get into the hands of someone who could help us with their operation, or who could tell us something to speed up the case a bit," said Juani Martín. The images reached two million people on TikTok. "People from Madrid, Barcelona, Seville have written to us on social media, offering us their homes for as long as it takes, and even a person from Malaga has offered to become a liver donor," added the father.
Both parents are happy and grateful both to the digestive surgeon at the Materno Infantil, who has been very attentive to the process, and to the surgeons who performed the heart surgery. In February they were told "what the operation would be like, that it was urgent and that there was a waiting list. They didn't say anything else, hence the video to put a bit of pressure on them to speed up the process", the father stressed.
Juani said that doctors have warned them that the child has "a time bomb in his stomach and at any moment it could explode". Numerous doctors, since they made the video, have advised them to take him to La Paz, they explained. The good news was confirmed verbally at the end of April and the little boy's papers have been at the hospital in Madrid for two or three weeks, they explained.
Materno Infantil sources have clarified that, given that "this is a complex and unusual intervention in our centre in patients of such a young age, from the beginning the Materno Infantil hospital of Malaga has made itself available to the family to carry out all the necessary procedures in order to guarantee the best treatment for the patient. For this reason, and after the family's request, the patient was referred".
"When the surgeons met with the family in February, they put them on the waiting list and, when the family found out that Madrid was the centre of reference, they asked to be referred there. It was at the family's request," said Junta sources.
The Malaga hospital did not clarify whether it called the family to operate on the little boy here and insisted that the parents had not refused the operation in Malaga, to clarify, once again, that it was the exclusive decision of the family to go to La Paz, which is, after all, the reference centre for this condition.
Tamara proudly told SUR that she owns four hamburger restaurants in the area around Avenida Europa and that she and her cousin, Romeo, who came fourth in a national competition for the best sandwich, have created a tribute to the fighting spirit of this little boy who never stops smiling.
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