The diary 'The stable mother, the house dealer and the little junkie' was published in mid-November. A poignant story about the hospitalization of baby Lisse, written by her mother Tamara Streng. The booklet is a reflection of their daily experiences in the hospital, with Tamara collecting tips for professionals, organisation, parents and the environment. “Because through my experience with Lisse, I saw what works well and what is not always handy.”

“How could it be otherwise”, Tamara laughs. “I work at Vilans , the knowledge organization for care and support. I like to share knowledge. That's my job”. With the creation of this booklet, Tamara hopes to inspire people who are involved in caring for a sick child. Whether this is as healthcare professionals or 'as a friend of'. Tamara is convinced that with some things you can really make a difference for someone. How? Tamara gives some advice in her booklet. Tips on things that you sometimes don't think about at all.

Lisa became very ill

To understand Tamara, we have to go back in time. During the 20-week ultrasound, she heard that her daughter Lisse had a heart defect ( complete AVSD ). An abnormality that is more common in children with Down syndrome. “I was well supervised by the cardiologists and after giving birth it became clear that Lisse does indeed have Down syndrome”. At about four weeks Lisse was operated on her heart. A tough journey, which fortunately went well. They went home with confidence after three weeks. To continue living there.

Everything seems to be going well, until Lisse catches a cold in early April. Tamara says: “I had just started to pick up some tasks at work again. Lisse was at the shelter for a day and I got a call. They were worried, because Lisse continued to cough very badly. I decided to go to the ER so that a pediatrician could evaluate her.” In the end it was decided to take Lisse in because she was not doing well. “I sent another message to friends. That Lisse spent a day in the hospital to see if she can recover. But that became a completely different story… she became very ill”.

Lisse had cleared up two 'ordinary' cold viruses. Everything was done to try to make her better, but it didn't work. She was on a ventilator and was completely asleep. In the end, Lisse was taken to the Intensive Care Unit at the LUMC, because they have a heart-lung machine there. They wanted to have it on hand in case all the efforts that were made were not enough. Tamara: “I underwent the first two weeks. So many things have happened that are hard to comprehend. This is how I woke up one night. I saw that five people were standing next to Lisse's bed. And not only the people with the IC coats, but also the white coats. It's hard to wake up to that." Lisse did not recover and went on the heart-lung machine. An intense time.

And then finally, after about 3 weeks, Lisse got better after being on ECMO for almost a week. She is starting to breathe on her own again and the recovery could begin.

If possible, share your story with those around you

During these intense weeks, Tamara wrote her story in her phone every night. What does she want to take away from that day, what should she remember and above all: what does she want to share with others? She shared this story with her network of friends, family, colleagues and others involved.

And that brings us to the first piece of advice for parents. If you can: write and involve people in your process. “Writing contributes to understanding and gives space for yourself. I have experienced that as a great asset. I have experienced that people gave me space. This also kept me close to myself. Others can easily follow you. Without putting expectations on you. For example, there was no pressure from work to go back to work.”

Attention from the employer

Tamara has felt supported by her employer. Mirella Minkman, Chairman of the Board of Directors of Vilans, explains what being a good employer means and how you interpret this when an employee is involved in intensive care for a sick child. Mirella says: "For me, being a good employer means that you always look for how the interests of your organization (and especially the mission of your organization) and the personal strength, commitment and possibilities of the people who work for you reinforce each other. I think you look more at the whole person than at someone as an 'employee'."

Mirella also mentions:

• If an employee has to deal with intensive care for a sick child, it is about tailor-made employership . As an employer, you should try to sense what helps your employee. Offer support, give a push or just let it bounce back and let it breathe. That sounds vague, but the direct manager has quite an idea. And of course you mainly discuss this with the person himself: what helps you to pick up the thread again? Or what else should be done? Nobody likes to sit at home with worries and stress, I assume. So also have faith in the good intentions.
  
  
• Regular contact is important. To empathize, to show that you are an employer in good times and in difficult times. And to explore options together. Keep coming to the office if you can and sometimes just send an unexpected gift.
  
  
• It is precisely in situations such as Tamara that you can show what is important and what you stand for as an organization. Also recently when one of our former employees passed away, we were really touched and we immediately organized meetings with the staff to reflect on this. Everything is off the agenda for that .
  
  
• The longer I lead, the more I learn that showing your human side is important in leadership. As a director and professor and all my other roles, people think you know everything and solve it and of course you succeed very well. But sometimes it's better to show what something does to you . That is also language and leadership.”

Make a difference as a professional

In addition to the fact that it has all been intense and exciting, Tamara says that she has also made many dear medical friends. “I really had a good time too. I would happily go back to the LUMC and the Amsterdam UMC. Not for the reasons we had then, but I would think: how nice.” Tamara noticed that it matters how people treat you and gives concrete tips in the booklet. “You can really make a difference for someone. Not everyone can do that, and you shouldn't ask that either. I don't expect a surgeon to have a nice chat about his bike ride to the hospital. I expect him to make her heart and connect the heart-lung machine properly. But, for example, there were intensivists who came to visit and said: I think the lady was able to follow it well. And then the doctor's assistant came and said: I'll explain it a bit more.

Tamara has seen how much expertise there is in healthcare providers. “They didn't let go. Kept puzzling and were also realistic in it. There were no sweet talks.” Tamara is emotional when she tells this, because there is also an advice to others hidden in it. “At one point, after a great consultation between the doctors, one of them came to me. She told how they had come to the decision to connect the heart-lung machine in the big meeting. I cried when she told me. Not because I found it exciting or annoying that that decision had been made, but because of the way in which she included me in their thinking and consideration process. What a love for your profession and for the child. For communication. Simply impressive”.

Tamara often reflects on the past few months and is happy that she was able to turn her experience into advice. Curious what other tips she has for you as a professional, organization, parent or environment? Read the booklet here.