17-year-old Flynn was born with trisomy 21 and struggles with a number of serious health problems, including Hirschsprung's disease, epilepsy, athyreosis and coeliac disease. Flynn has other health problems, including deficiency symptoms and being underweight. New medical conditions are constantly being added, necessitating regular hospital stays and leading to new diagnoses.
Flynn cannot express his pain verbally and only communicates to a limited extent using sign language. With the onset of puberty, he also struggles with irritability and self-harming behavior and often refuses necessary medical measures such as infusions or wearing an oxygen mask.
Flynn's medical care is made more difficult by the lack of data exchange between the various hospitals where he is treated. No hospital has complete access to his entire medical history or medication list, which often means that his parents have to retell his extensive medical history over and over again.
No, we were not prepared for Flynn to be born with a disability. We had done the usual screening tests, such as measuring the nuchal fold, but Flynn's trisomy 21 was not detected. After the birth, the doctors said at the first check-up: “Your child is healthy.” We were skeptical because it was different from Helena, our first child. When we asked, we were told: “Don't worry. Be happy you have a healthy boy." When the diagnosis came, it was a real shock.
Our lives have changed completely. My wife is from Australia and we had planned to return there but Flynn spent the first six months in hospital. We realized that the healthcare system in Switzerland is probably better than in Australia. That's why we decided to stay here. Besides, we were so exhausted that we didn't have the energy to rebuild our lives in Australia. So we ended up staying in Switzerland.
The diagnoses came bit by bit. Trisomy 21 was diagnosed relatively quickly. The other conditions, which mainly affect his digestive system, were diagnosed and treated gradually. It was a constant process of trial and error. Flynn is currently back in hospital and it is not yet known exactly why.
That's a difficult issue. In my opinion, this exchange often doesn't work well. Flynn is being treated by different doctors in different hospitals. In an emergency, the respective hospital only knows the part of the patient's medical history that is documented in that hospital. They have no access to the data from other hospitals. We as parents then usually have to provide the entire medical history. If necessary, the hospital then requests the reports from the other hospital.
Above all, it means a lot of organization. One of us as his parents always has to be at the hospital. There are sometimes very good day or night carers, so we don't always have to be there, but we still have to organize the whole family. Flynn's siblings are now older and more independent, but it still requires a lot of planning. We've lost a lot of spontaneity in our lives as a result. This weekend we had something planned that we had to cancel again. We are constantly trying to carry on with the rest of our family life and not build everything around Flynn's hospital stays.
It would be a huge relief if all data were collected centrally and all treating doctors, insurance companies and other bodies could access it. That would be much more efficient and would avoid misunderstandings. We collect this data, but we don't have all the information at home either. That's why it would be a great relief for us. I imagine a central dossier that we as parents could access and decide who is allowed to see it. All treating doctors would have the same information and misunderstandings could be avoided. I think that the IV and insurance companies should also have access in order to simplify the administrative work.
We would basically share all of Flynn's health data as well as my own. This information could help other patients with similar diseases and could also be used for evaluations.
It's important to me that it can be used - by anyone who can help Flynn get better. Many people support us and I would be delighted if everyone could use this data for Flynn`s benefit.
Martin is the father of Flynn, who was born with trisomy 21. The family lives in Biel. Flynn is 17 years old and attends a special school in Münchenbuchsee, where he lives most of the time. He spends an average of two weekends a month and half of the school vacations at home with his parents, older sister and younger brother.
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