“We lived five months isolated in one room.”

 

Derek, now three years old, was the Catalonia’s first ‘bubble boy’. It was -verb written in the past tense-, because it is no longer so: after a bone marrow transplant, is recovered from the severe combined immunodeficiency that the Hospital Clínic of Barcelona detected him at an early age, right after his birth, thanks to the heel prick test, which is part of the neonatal screening program of Catalonia. This test was included by Salut in 2017 and, since then, it has already detected six ‘bubble children’. In these six years, the following has been performed to more than 350,000 newborns.“At 13 days after birth Derek, they called us and told us he might have severe combined immunodeficiency. The next day we went to Vall d’Hebron and they put us in a room that was like a bubble, where we were living for five months,” says the mother, Raquel Colomer. A bone marrow transplant saved the life of the little boy, who is now living a good life. absolutely normal. Severe immunodeficiency syndrome (that of the ‘bubble children’) affects. one in 56,000 newborns and, with an early diagnosis, the survival of the little ones is 95%.

How do you live in a ‘bubble’ “We had to shower every time we came from the street. And, inside, we had to be with hospital clothes. We would change in and out. And we could go in As long as we didn’t have a fever.” Raquel recounts. Inside the room, the parents had to bring mask, be covered up to their feet and sometimes even wearing a cap. “We slept there, made changes every 24 hours. And we received visitors through the window and we were talking through a telephone.” he adds.

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The procedure

This bubble child, like the other five diagnosed in Catalonia in recent years, was detected thanks to the heel test, which includes the neonatal screening program of Catalonia, a program “of reference at national and international level, pioneer and innovator when it comes to including new diseases.” in the words of Dr. Ana Agudo of the Hospital Clínic. A press conference was held this Thursday to explain these six cases.

The Clínic has a laboratory where it analyzes all the tests of newborns in Catalonia. “We analyze all the samples and, when we detect a positive case of a disease, we contact all of the clinical reference units to initiate a early treatment in case it is necessary,” Agudo explained. Salut included in 2017 the heel prick test (which consists of making a small cut in the baby’s foot between the first 24 and 72 hours of life to draw a blood sample) in the neonatal screening program and has since detected a six ‘bubble babies’, five of whom are alive today.

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It was the Vall d’Hebron Hospital who called Derek’s family to tell them the news. In these cases, the fathers and mothers of “multidisciplinary” manner and with the help of a psychologist.” as stated by the Vall d’Hebron doctor Andrea Martín. “The problem with ‘bubble kids’ is that they have. many chances of getting infected with very serious viruses and bacteria. which cause them to die in the first year of life. So the idea is protect them, that no organ is damaged, so as to to arrive well at curative treatment.” Martín explained. While Derek received a bone marrow transplant, other children receive a bone marrow transplant. gene therapy.

Most transplants are performed at two to three months, at the earliest. But, during that time, the baby has to be in the hospital. isolated. “If everything goes perfect, a month and a half after transplantation could leave the hospital with very strict controls,” Martín said. The children are considered to be cured of severe combined immunodeficiency syndrome at two years of age.

Catalonia is pioneer in including this heel prick test in the screening program. For a test to be included it must meet certain criteria, such as being a known disease, that there is a treatment and to have a biomarker. “There is talk of including the test for the spinal cord atrophy in this screening,” said Dr. Agudo.

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