Since her birth, 4-year-old Phylene Linestra has a rare heart defect. The young child has already been operated on three times at the Child Heart Center at the UMCG in Groningen. Time and time again, operations have been lifesaving, says mum Healy, 37.
She is fine now. “Maker is still recovering from her last surgery. She has been in a coma for five weeks. My husband and I have never been by her side. It has a huge impact on the rest of the family, we have two older children.”
At the end of December, then-Minister of Health Hugo de Jong announced that children with congenital heart defects would only be operated on in two future hospitals.
According to the minister, the focus – as it is called – on pediatric heart surgery is necessary to be able to continue to ensure the quality of care in the future. There are only a dozen surgeons in the Netherlands who can perform this type of operation. Five of them are over 60, and one is over 70.
The minister took the decision after the hospitals themselves did not agree on which ones should be allowed to continue operations. His choice fell on Erasmus MC in Rotterdam and UMC Utrecht. CAHAL, a partnership between hospitals in Leiden and Amsterdam, and the University Medical Center Groningen has fallen by the wayside.
Cats have always been treated at UMCG. When mum Helly heard about the possibility of closing the pediatric heart surgery department, she was unable to sleep. She immediately started a petition, which has already been signed 262,000 times.
Today is the presentation to the House of Representatives, which will discuss the sensitive issue next week. The Department of Surgery will move to Utrecht and Rotterdam. Centers in Leiden and Amsterdam will also be closed according to plans. However, pre- and post-care for young heart patients still exists in hospitals.
‘A conclusion not without consequences’
Mother Hailey fears that if something urgent happens to Feline, she will be helped too late. “You will soon have to go to Rotterdam with the shock helicopter, but is this in time?”
The mother also questions whether the care and facilities would continue if the surgical branch closed. “When I was at my daughter’s bedside for five weeks, I saw the number of children being brought in with something sharp. I am afraid that the closure of our center in Groningen will not continue without serious consequences.”
Parliament will discuss the future of the Child Heart Center in Groningen next week. Yesterday, Health Minister Ernst Kuipers did not want to discuss “individual issues”, but emphasized that he “believes it is wise to focus care”.
No running race
MP PvdA Attje Kuiken, who will also receive the petition, stated that closing pediatric heart surgery in Groningen is “not at all a race”. “The potential closure has serious consequences for parents and children in their most vulnerable moments, and it also has serious consequences for other care.”
Kuiken found that explanation and interpretation of the decision were insufficient. “Why were two locations, Rotterdam and Utrecht chosen? Why was an impact analysis not done? What does this mean for the rest of the healthcare and healthcare staff? We still have a lot of questions.”
The Ministry of Health recently wrote about this choice in a letter to Parliament: “However inconvenient, geographical spread is not of critical importance in focusing this form of care. The professional group has also referred to the Ministry.”
According to the ministry, this is because operations can be planned in most cases. The letter states that in cases where patients require acute care, they can be cared for at the nearest emergency shelter.
Pediatric cardiac surgeon Wouter van Leeuwen (42) from Erasmus MC is one of 12 surgeons in our country who perform these complex heart operations. He specialized for nine years to be able to do that. “Every year in the Netherlands we perform this type of heart surgery on 170 very young children,” he says.
“A few surgeons are already 60 and over, so they haven’t had jobs for years.” Van Leeuwen compares the operations to landing a huge Boeing. “To do this successfully, you need a special team that is perfectly in tune with each other.”
It is not just a matter of training a few surgeons. “The whole team has to spend flying hours to be able to properly perform these specialized operations. If you combine care and knowledge, you can get the best care.”
The heart surgeon also understands the concerns and feelings of parents well, but calls for a necessary step. “It’s not a question of money either. I really believe that if we focus this care, we can actually save the lives of young children.”
Today, Van Leeuwen is performing surgery on a one-year-old heart patient from Nijmegen. “Children’s heart surgery there was also canceled a few years ago, but all the knowledge and facilities will remain. Not that the rest of the care will deteriorate if the surgery branch is closed. The rest of the facilities and knowledge will also remain in Groningen.”