Get to know Juli

Written by Juli’s mom, Anna.

5 Minutes

Our personal story:

Our daughter’s diagnosis was made all of a sudden and unexpectedly the day before my planned beach vacation. On that Monday on which I actually wanted to lie in the sun, I found myself surrounded by 8 doctors in a treatment room at the Cologne clinic, who looked for the cause of the very poor examination results using ultrasound. The whole time I believed that the doctors who performed the treatment had made a mistake. Unfortunately, it quickly became clear that an operation was needed to save our daughter’s life.

This was followed by weeks in the hospital. Our daughter was an only child at the time, and I was able to stay with her in the hospital. After discharge, there was postoperative therapy with medication that had to be administered at regular intervals. I have adapted kindergarten, work and free time to this rhythm.

It was a difficult time; In the event of uncertainty, however, we had the E.I. on our side, which put us in touch with other parents who were in a similar situation. This exchange was and is still very important. This network has a very important validation function in everything that happens to our child therapeutically.

Our two children have attended an integrative daycare center. The moto of the daycare center is “It is normal to be different.” They both have experienced a lot of tolerance and learned to embody the situation. Our daughter now speaks very openly about her story. She’s approached by great interest from her friends.

Juli has a firm grip on her illness and likes to tell her friends her very own story.

Challenge for family life and partnership:

The stress a family is exposed to in such an extreme situation is difficult to describe. Long hospital stays, operations, drug therapies and other limitations in life then suddenly become normal. When a child with heart disease is born, the focus shifts to the disease. This situation is not only very stressful emotionally, but it also simply costs a lot of time. Long hospital visits, frequent checks. Very few affected people do have specialist clinics and doctors are on their doorstep. There is simply not a lot of time and space left for a couple.

Today our daughter’s state of health is stable, but every time we go to see our resident cardiologist for a check-up, there is this mixed feeling of insecurity, fear and humility. Past setbacks have felt like rewinding a tape. Unfortunately, in that case I already knew what to expect. In such situations, I personally always hear the tinkling of the devices on the ward.

Help through self-help:

We received psychosocial support from the social worker on the ward and the E.I.. At first, we felt left alone with the diagnosis, overwhelmed and disoriented. The E.I. gave us enormous emotional hold. Help is needed in such an extreme situation. It offers concrete assistance and / or coaching, arranges contact with other affected families, organizes free time for families and / or children and youngsters. Should our daughter have complications in the future, the Cologne landline will be the first I will dial. The E.I. is an important part of pediatric cardiology in Cologne, and it is impossible to imagine the ward without them.

My family is doing fine right now. We have a long dry spell behind us and appreciate the “now” – apart from the pandemic. Thanks to the positive course of the disease, we can look positively into the future. I would now like to take this thought out into the world and, together with the E.I., give other families courage and hope.