Lara was born in October 2019, but she has done it again almost three more times. With 20 days of life, they detected a serious heart disease for which she had to travel from her native Mallorca to Barcelona in a medical plane. At the age of a year and a half and after two cardiac arrests, she undertook the same trip, this time in a military plane converted into a hospital at the risk that she could lose her life. They managed to stabilize her and a heart transplant brought this little Majorcan back to life. For this story to end with a happy ending, the strength of Lara and her parents (who also have a son with Down Syndrome) was crucial. But it could not have been achieved without the rapid action of the medical services, of the effective collaboration between hospitals -the one in Son Espases and the one in Vall d’Hebrón in this case- and without an ECMO team (acronyms that unfortunately have become famous in the pandemic) that calls for a state program to be able to provide a faster and more effective response to cases like Lara’s. And there was a valuable gesture for this outcome: the solidarity and generosity of a family that made it possible for the heart of another or another little fighter to beat in Lara’s body today and that will allow her to lead a life very close to normality.
Lara spent almost three months connected to a machine that made her heart while she waited for the transplant
Laura’s pregnancy, Lara’s mother, was completely normal. Marc, the girl’s older brother – with whom she has been with for 20 months – was born with Down Syndrome and this made it necessary to follow the girl’s pregnancy to the minute. “They did a thousand and one tests on her belly and they found nothing,” Miguel Sánchez, Lara’s father, who is 35 years old and works in the hospitality industry, tells La Vanguardia. He was born without any problems, but after two weeks her parents noticed that the girl was having trouble breathing and that she was getting tired taking the bottle.
The family lives in Alcúdia (Mallorca) and from the Inca hospital they were referred to Son Espases. There they received the diagnosis: dilated cardiomyopathy, a genetic disease that affects the heartbeat. The critical situation in which Lara found herself forced the little girl, who was 20 days old, and her parents to travel by medical plane to the Vall d’Hebrón hospital in Barcelona. She was able to get over it and return home within a few weeks.
A machine called the Berlin heart performed Lara’s heart function while she was waiting for a donor.
But at 16 months, in April of last year, he suffered a worsening. “In Son Espases she suffered two cardiac arrests and we were notified,” explains Jaume Izquierdo, an intensivist pediatrician and coordinator of the pediatric ECMO program at the Vall d’Hebrón hospital in Barcelona. Lara’s situation was critical and she needed ECMO support, a highly specialized technique for which few centers carry out pediatric transfers (only Vall d’Hebrón itself, Madrid’s October 12 and Carlos Haya in Malaga). Two nurses who are experts in pediatric ECMO, two pediatric intensivists – among whom was Dr. Izquierdo – and a pediatric surgeon rushed to Son Espases at four in the morning. They found a very critical patient, but luckily the ECMO support (which connects the patient to a machine that oxygenates the blood) worked and that saved her life again.
The girl had to be transferred to Barcelona, but after the cardiac arrest, the transfer by medical plane was “risky because she was in a very critical situation and could suffer a cardiac arrest again,” says Izquierdo. For this reason, they had to resort to the Army, which provided a Hercules, a medicalized military plane. It was a small air hospital that guaranteed to be able to act urgently in case of problems during the flight. The parents could not accompany the little girl on this occasion on the ship, but the pilot, Pilar, explained to them how everything was going, Lara’s father says excitedly.
From Mallorca to Barcelona in a plane hospital
After two cardiac arrests, Lara waited for the transplant connected to an artificial heart
Already in Vall d’Hebrón, the little girl spent two weeks on ECMO, but upon verifying that her heart did not improve, the doctors decided to change Lara’s machine. They connected her to a so-called Berlin Heart, Izquierdo details. It is a kind of artificial heart that also makes it possible to keep the patient awake until the heart transplant arrives, which was necessary in Lara’s case. “We can wait from two to three months to a year for a transplant and the ideal is for the patient to arrive as well as possible and stimulated,” explains the intensivist at the Barcelona hospital.
Thanks to this machine, which kept her awake, Lara was able to maintain contact with her parents, who took turns being with her. She was even able to go out to the hospital door to get some air, always accompanied by Minie, a doll that a hospital nurse gave to the little girl and from which she has not been separated since then, says Laura, the mother, who is 36 years old and She is a primary school teacher.
Lara loves to enjoy time in the park, which still cannot be as intense as she would like, after so many months hospitalized
The machine also allowed her to be stimulated by the staff and thanks to this she improved until almost three months later a donor appeared. Lara’s parents had a hard time accepting the transplant. They were “afraid and also excited”, but they ended up understanding that it was the only option, explains Miguel, who admits that she had to receive psychological treatment to withstand the situation they had to face. They received the news of the donor in Mallorca, where the two had moved to spend a few days with her older brother, who was left in the care of their grandmothers, but who also needed her parents. “We left everything and we went whistling,” explains Miguel.
Three weeks after the transplant, Lara went up to the ward While they waited for her return, Marc, Lara’s brother, visited her several times and it was a “shot of energy” for the girl, who spent many months away from everything.
From doctors to cleaning staff
Grateful to all the people who have crossed her hospital life… and to the donor who brought Lara back to life
Last August she was discharged and now Lara continues with her regular check-ups in Son Espases and also in Vall d’Hebrón. And each time she leads a more normal life. She plays, walks, talks and goes to the park as much as she can, an activity that “is her biggest hobby after being locked up for so long” but that she has a little restricted due to the risk of infections, says the mother her. She will have to take medication for life, but she will be able to lead a fairly normal day to day and even play sports, points out Izquierdo.
Lara’s parents spent months of anguish away from home and they only have words of gratitude for each and every one of the professionals who have crossed paths with her hospital life, from the nurses and doctors to the cleaning staff who entertained themselves to play with she. “Everyone tries to help you”, sums up the father excitedly when he talks about the Barcelona hospital. “Dr. Izquierdo came to help my daughter after a 15-hour shift,” he remarks. In the same way, he wants to show her gratitude to the army for facilitating the transfer of her daughter and assures that the Minister of Defense, Margarita Robles, is personally interested in Lara’s evolution.
But her heartfelt gratitude goes to the donor’s family who have allowed Lara to have a new chance at life. “We would have liked to personally thank them for what they did… they saved our daughter’s life,” explains Miguel excitedly.
Only three pediatric ECMO in Spain
They demand a state plan for the urgent transfer of critical children
After the situation experienced, Lara’s father claims the importance of taking care of a public health service that has saved his daughter and regrets that if this had happened to him in the United States, they could not have paid for it. And he joins the request of Jaume Izquierdo, who calls for a state plan that allows transfers like the one that saved Lara’s life in a more coordinated way.
Dr. Jaume Izquierdo explains that ECMO (much better known now due to the pandemic) is a highly specialized technique and very few centers transfer it to other hospitals in the field of pediatrics. Only the center where this 39-year-old intensivist works (Vall d’Hebrón) together with the 12 de octubre hospital in Madrid and the Carlos Haya hospital in Málaga have equipment of these characteristics that at a given moment, as in the case of Lara, they must mobilize and travel. That is why they ask that a state program be created to organize emergency transfers of critical children. “Right now everything works due to the good will of hospitals and professionals,” laments Izquierdo. There is no system of guards established and no one in charge of the necessary steps that must be done diligently, such as deciding who will put the ambulance.” And he warns that Lara’s case finally ended well, but that others perhaps not precisely because of the lack of this program.
Lara now: can walk, talk and play normally
Now Lara makes up for lost time with her brother Marc. They have been together for 20 months and they understand each other perfectly: “they are thick and thin,” says Miguel. She loves to play with clay and listen to songs so she can sing and dance to them. Also playing at feeding her babies whom she has even fed with a tube at some point, as happened to her while she was hospitalized. But if there is something that she likes above all, it is going to the park. And next year she will be able to go to school “she is a girl with a great desire to live. She has shown us, ”say Laura and Miguel.