Berlin Heart (video transcript)
Clinical Nurse Specialist: The Berlin Heart is used for children in very severe heart failure, for whom the medications are no longer working. It’s generally used to support the function of the child’s heart while they’re waiting for a suitable heart to become available for transplantation.
The Berlin Heart really is a very simple but very effective air-driven pump that usually supports the left side of the heart. It consists of a chamber divided into two halves: a blood-filled side and an air-filled side. The air-filled side of the pump is connected to a pneumatic pump which basically acts as a sophisticated bicycle pump. As air is pumped in and out of the Berlin Heart, blood is sucked in from the main pumping chamber of the child’s own heart via a tube or a cannula and then is pushed back out by a second cannula into the main artery which carries blood around the body.
Deciding to opt for the Berlin Heart treatment is a very difficult decision to make for families. Before they agree, you need to ensure that firstly they understand the reasons that we’re recommending the Berlin Heart treatment, and secondly, that they understand the implications. That is, that they may be living in hospital for many months, and also that there are risks involved with the treatment.
Parent: The downside of it is that you are hospital-bound, and you don’t get to go out that often. You know, you do go out, obviously, but it’s not every day so you know, you have to get that into your head that you’re going to be in hospital for a while. But, the Berlin Heart is keeping her alive at the end of the day so, it’s the best thing for her at the minute while we wait for a transplant.
Clinical Nurse Specialist: The Berlin Heart’s implanted directly into the heart and the main artery so it requires the child to go to theatre for quite a lengthy operation. Immediately after surgery, the child will return to the intensive care unit. They can still be quite sick for some time after the operation and will require continuous monitoring. This can be quite a traumatic time for parents, but for children with such severe heart failure, the Berlin Heart offers the best possibility, not only of surviving to transplantation, but of having good quality of life while waiting.
Parent: Eight months ago, I didn’t know anything about the Berlin Heart or why her INR had to be this number or whatever else, but now I can confidently say that I understand the procedure of things and why the doctors do the things that they do and now I can probably say that I work with the doctors in saying, you know, looking at patterns of things, of doses of her medication and things like that, and obviously I see her every day so I notice the smallest changes with her, if she’s not eating or if she’s looking a bit puffy, or you know, something like that. So, yeah, they do talk with you, you make decisions together rather than them making decisions and then you not know what’s going on.
Clinical Nurse Specialist: We really encourage parents to be hands-on in their children’s care, as this gives them some control over what’s happening and parents do find this quite empowering. Parents get involved in changing the dressings, which is good, not only for establishing a normal routine but also in preventing infection around the area where the cannulas are implanted. Parents also train to look after the machine itself which gives them some independence because they can actually leave the ward and go out around the hospital without having a nurse present all the time.
Parent: I like to be hands-on, anything that I can do, I will do it, you know, I do the dressing change and things, you know, I give her all her medication and things like that and they know that I’m confident in doing it as well.
Clinical Nurse Specialist: It is a really difficult decision to opt for Berlin Heart treatment but, when the medicines aren’t working, there are very few options available to these families. If they choose not to opt for the Berlin Heart, then we will respect that decision, but the outcome for these children will be very uncertain.