"I would like to spend more time with you, but I need to rest."
The pediatric palliative care unit at Sant Pau Hospital provides care to children with very serious illnesses in their final months of life.
Barcelona"I would like to spend more time with you, but I need to rest." These were the last words Pau Verdaguer spoke just hours before his death on September 17, 2024, at the age of 20. The young man suffered from an autoimmune disease since birth, congenital erythroblastopenia or Blackfan-Diamond disease, which prevented him from producing red blood cells. He was diagnosed at birth, on January 5. Pau arrived like a true Three Kings' Day gift. The icing on the cake of a close-knit family made up of his parents, Cristina and Sergi, and his siblings, Adriana, Miquel, and Albert, who at the time were 10, 11, and 14 years old, respectively.
Pau underwent his first blood transfusion the day after he was born. "We tried many immunosuppressant protocols to confuse the immune system, but there was no way to find a solution," Sergi recalls. The solution was to give him regular blood transfusions. At first, they went well, but he needed them more and more often, which, Sergi points out, "also had collateral damage, which was that his liver and heart became overloaded with iron." "This meant that, five days a week, at night, we had to administer medication that helped him eliminate iron subcutaneously, something Pau hated."
From transfusions to bone marrow transplants
All of this happened from the time Pau was born until he was 15. "At first, they told us that if the treatments didn't work, the solution would be a bone marrow transplant, but for it to be 100% effective, the donor would have to have an identical HLA," Cristina clarifies, something that can only be achieved with one sibling and not with all siblings, as there's only a 25% chance. "If not, the other option was to enter a search list for compatible bone marrow donors (REDMO)," she recalls. After a selection process for failed embryos, the family adopted a kind of routine in their lives. Pau, however, was in good health: he was a happy child who went to school and played soccer, smiling, and full of life. "He lived a normal life and always said he wasn't a sick child, but rather that he had an illness. His illness didn't define him," Cristina emphasizes, who also doesn't overlook the effects the disease had on him: headaches, weakness, he tired more quickly... All this, in addition to being short, because Pau never grew taller than 1 meter.
Once every two or three weeks, Pablo went to San Juan de Dios for transfusions. "At first, it was every four weeks, which didn't bother us that much. But he needed it more and more often, and when it was every two weeks, his liver and heart started to suffer a lot," Sergi notes. When the Verdaguers had practically forgotten about the transplant option, in August 2018, when Pau was 14 years old, they received a call from Sant Joan de Déu to inform them that they had found a donor who was a 9 out of 10 match. "We told Pau so he could think about it, and he decided to have the transplant," Sergi explains.
Engine and leader
Pau's attitude (and that of the rest of the family) was enviable throughout the entire process. At school, the boy initially didn't say anything about his illness, but in primary school, he asked for a tutorial in class explaining it. "Following the transplant and subsequent isolation, what scared him was having to go a whole year without seeing his classmates, so he again asked to dedicate a tutorial to explaining what they would do to him," Sergi notes. Pau's parents were very proud of this initiative, "but also of his understanding of life, his maturity, and his way of dealing with the illness." Pau has been "the driving force and the leader who has kept us all going," they emphasize, despite the upheavals that followed the transplant and which, in recent years, led to him spending more time in the hospital—first as a pediatric patient at Sant Pau, where he had the transplant, and then, during the transversion, and then, during the transplant.
Even so, Pau managed to pass his A levels and was very excited because that very month he finally passed, he was due to start a degree in product design at the Lonja. "He wanted to live," Cristina and Sergi constantly repeat, and although the last year and a half in particular was very hard, due to infections and inflammations in his body, the necrosis that Pau suffered in his ankle and his sudden deafness, in addition to hospital admissions, the amyloidosis took advantage of every opportunity for wellness that he could get. This is how, for example, he met the Barça women's players and Mag Lari, or had the opportunity to visit the Espíritu Roca.
He was also able to enjoy a day of paddle surf on Barceloneta beach a month or so before he died, and also Gelocatila, one of the Pallapupes clowns whom he hadn't seen for many years. These experiences were made possible thanks to the Villavecchia Foundation and, among other things, now allow Cristina and Sergi to remember their son, a food lover, a member of the Diablos de Gràcia who never missed a correfoc (fire run), even in a wheelchair, and a renowned music lover, with a smile on his face.
The warmth of the palliative care team
Since Pau's transplant, the pediatric palliative care team at Sant Pau became like a family. Those were very intense years, with very serious problems. It was also when they met the people at Villavecchia. "The people at the foundation not only connect with the patient, but also with us, and they made themselves available to his siblings," Cristina recalls. Sergi, in turn, adds that they would even show up without being asked: "They were like a kind of extended family who always supported us. During Pau's admissions, the nurses or the palliative care psychologist would always show up to greet us and give us a hug. And that was comforting." Cristina still relies on support today, as Ana Belén Bautista, a psycho-oncologist on the pediatric palliative care team at Sant Pau Hospital, is helping her deal with her son's grief.
Bautista explains that families usually arrive at the palliative care unit referred by other teams or specialists, and after an initial visit—either in the hospital or at home—where they introduce themselves and gather information, they carry out "an initial examination and an intervention and follow-up plan." Within the team, there are several profiles: pediatricians, nurses, social workers, and psychologists. Depending on the complexity of the disease, the unit also often coordinates with hospital specialists, physical therapists, occupational therapists, speech therapists, etc. "And also with primary care professionals, social services, and early intervention providers," adds the psycho-oncologist.
931 children served in 2024
Until 2016, the Villavecchia Foundation—which works to improve the quality of life of sick children and help their families—was often told that not enough children died in Catalonia, and therefore, this resource was not necessary, forcing these children to be cared for by adult palliative care teams. The reality, according to official data, is that in 2024, 931 pediatric patients were treated in different healthcare centers in Catalonia, and the percentage of cases in which death occurred at the location desired by the families was 95.2%. Bautista emphasizes how having teams and resources specifically for children and how these teams have been progressively integrated into the Catalan Health Service facilitates the provision of "interdisciplinary care" and not only treats the child's illness but also addresses the emotional, social, spiritual, and educational aspects. "We join forces, and that is something families perceive and value," he adds. And, she emphasizes, contrary to popular belief about palliative care, which is specific to the end of life, "we try to ensure referral is as early as possible, as it supports the entire illness process and encourages prior work that facilitates the management of situations we encounter at the end of life."
The pediatric palliative care team tries to ensure children have as normal a life as possible within the circumstances of the illness and treatments, which, in Bautista's opinion, "implies not only being able to continue their education, but also enjoying leisure and free time." For parents, it is also "fundamental" to maintain their social and family support network, continue with their jobs, carry out self-care activities, etc. When a child enters a moment of end of life, Bautista adds, emotional reactions tend to be more intense. "We must also be prepared to accept this," she says. These are very delicate moments, he continues, "in which it is necessary to act with sensitivity and avoid any type of measure that could harm the child." A fundamental task for which it is not only necessary to have these teams and for everyone to have access, regardless of where they live, but also to have the necessary human and material resources. Bautista also emphasizes the need to demand 24/7 care, "because children do not choose the moment they worsen or die." This Saturday is World Hospice and Palliative Care Day.
During illnesses, purely medical care is provided by the hospital, while the Villavecchia Foundation primarily offers psychosocial care, with leisure activities, mutual support groups for mothers, family respite activities, home music therapy, and more. Villavecchia always strives to encourage children to be children despite their illness, a goal supported by its fifty volunteers. Maite Bravo, the foundation's volunteer coordinator, points out that when an illness strikes, life changes in a flash, and the strain and stress affect the entire family. "This is where the volunteer comes in, someone who supports this stress by relieving the family, but also by providing a breath of fresh air for the children, so they don't abandon their play routine," she notes. They also accompany children admitted to the hospital when no family member is able to do so. "We always say that volunteering is like a custom-made dress. We focus on what the children like to do: reading stories, making bracelets, painting, playing cards..." explains Bravo. When situations become more complex, volunteers begin to bring family respite into the home one or two days a week, which each family can use as they wish (sleeping, walking, exercising, cleaning, spending time with their other children, spending time together as a couple, etc.).
"We strive to ensure that life continues for all children between the ages of 0 and 18 admitted to the pediatric ward of Sant Pau Hospital, which is where we do our hospital volunteer work," Bravo emphasizes. That's why, when Christmas comes around, the volunteer team decorates the ward and organizes workshops like snowman-making; for the Castañada (Feast of the Chestnut Festival), they also decorate the ward, and a volunteer dresses as a Chestnut Seller; and St. George's Day is also celebrated. They also accompany them on adapted recreational outings that the foundation periodically schedules. "You learn a lot from children, but you have to be clear that it's not easy and that some children die," Bravo points out. However, Bravo concludes, "the shared feeling among the volunteers is one of gratitude."