“We don’t decide when our children will get sick.”

PalmBea Oliver's pregnancy was perfect, "like a movie." "Everything was normal. No vomiting, not a single discomfort." Guiem was born and rushed out of the delivery room. Something wasn't right. She received no explanations, only uncertainty. Bea felt "very questioned" because they asked her repeatedly if she had used drugs during pregnancy. When she finally saw her son, "there wasn't a part of his body where he didn't have a wire." "I wanted to die. I just cried while I watched the woman next to me give birth to a completely healthy child. You never erase these moments from your mind. You just accept what you've been dealt. You live with it," she confesses.

The diagnosis came four months later. Guiem had myotubular myopathy, a rare disease and the only case diagnosed in the Balearic Islands. It affects muscle and musculoskeletal tone and forces Guiem to live with a tracheostomy and a ventilator. "He doesn't walk, he babbles, his secretions have to be suctioned..." she explains with the ease of someone who has grown accustomed to care being part of her daily life.

Myotubular myopathy doesn't cause any harm. "There's no research, it's not degenerative, but more complications are appearing. He doesn't have a high quality of life. Life expectancy is short," describes this 35-year-old mother. She was a carrier of the mutation that affects her son, "undetectable in prenatal tests."

Bea acts as a spokesperson for around twenty families demanding a 24/7 pediatric palliative care service in the Balearic Islands. Currently, the team of pediatricians at Son Espases Hospital is available Monday to Friday from 8 a.m. to 3 p.m. and is on call until 8 p.m. During evenings, weekends, and holidays, the 80 families receiving pediatric palliative care—not exclusively for end-of-life care—lack this personalized service. "Our children need a lot of care and assistance. Their health is full of ups and downs. 8 a.m. to 3 p.m. care is not an option because they can suffer complications at any time. If the situation worsens, we need to be seen by our palliative care pediatrician, who is familiar with our child's medical history."

The families sent a letter to Prime Minister Marga Prohens demanding an expansion of the service. In fact, the government rejected a budget amendment in which the opposition proposed allocating €250,000 to meet the families' request. They are now preparing a Non-Law Proposal (NLP) to urge the government to implement 24-hour pediatric palliative care. "We request that they train professionals who come into contact with children: both healthcare and non-healthcare professionals. It's a different approach to saving a life. These are families who, when they suffer very long processes, need family respite units. And public healthcare should cover all stages of life," explains Socialist MP and former Health Minister Patricia. "These units are not palliative care units," she explains, adding that the unit was established from scratch. She is aware that measures are being implemented that "affect the largest number of people" and that, from an economic point of view, the managers maintain that it is not efficient to offer a service for a minority. "We were surprised that they did not accept the amendment of 250,000 euros to expand the service within a [Health] budget of more than 2.5 billion euros. Families go through very difficult times because, with a child, the suffering is multiplied. It's very difficult to measure what they feel and what they're experiencing," she adds.

The IB-Salut has not provided ARA Baleares with data on the staff currently dedicated to pediatric palliative care, nor has it allowed them to explain their work. For its part, the Ministry of Health assures that it has contacted the families and is trying to find a solution. For Marga Llull, mother of Berta, a six-year-old doll with spinal muscular atrophy type 1, the service they are demanding is a matter of "human dignity." "No child and no family should go through it alone and with uncertainty. These illnesses don't understand schedules. I don't decide when my daughter will get sick, nor does any family, but it's a very high emotional burden to see that you have a medical problem on a Friday at two in the morning and you have to wait until Monday to see her pediatrician. You don't know what's happening and you don't know what you'll find. It's peace of mind for a very difficult life." These are very complicated pathologies that are beyond the reach of specialists who are not trained by them.

Walking and Breathing

Marga noticed that her daughter was having difficulty breastfeeding. The midwives realized it was a muscle tone problem. Within 15 days, she had a diagnosis. Within a month, the first treatment. Fortunately, they were able to name the condition, which affects all of Berta's muscles and, therefore, breathing, swallowing, speaking, and even something as basic as sitting still. "Her motor neurons don't transmit information to the muscles and they atrophy," Marga summarizes, adding: "Walking is the least of it. With a wheelchair, you can get anywhere, but what do you do when your lungs don't work?" She asks. She, like Bea and so many other parents, speak naturally about how they organize themselves. "We must make it visible," she asserts, and doesn't hide the fact that "life changes completely." "Day to day life is very complex. You live in isolation, which is why psychological support is so important. The reality is very different from that of a healthy child. From the time Berta wakes up until she's ready to go to school, it can take an hour and a half. And from the time you start dinner until you say "goodnight," it takes "two minutes," she exemplifies and compares. The youngest is their second daughter, two years old, whom the couple had through assisted reproduction to circumvent the gene for the disease, which they both carry.

Social life suffers; they can go long periods without being able to go to school, but all they can do is accept it. "The situation is not going to improve. The psychologist told us that if we are aware of where we are, we will do well," she adds.

Marga looked after her daughter for the first five years thanks to a childcare permit for serious illness (Cume), which allowed her to collect her salary. Now she has returned to her job as a teacher and her husband has taken over. "You need to be more than just a carer," she claims, and repeats the idea to defend the 24-hour service: "Implementing it is independent of political colour, it is just human dignity." Bea adds a final note full of humour and visibility: "We don't see our children as strange, we see the rest. They give me a healthy child to hold in my arms and I say: 'He's missing things.' He has no cables. My friends laugh and I simply say: 'a 'a '.