I found out sad news this week. The little girl who was on the Berlin Heart in the CVICU when M got transferred there passed away a little over a week ago. She had been placed on hold for a transplant because her lungs were in such bad shape prior to going on the Berlin Heart and they had hoped that she would be able to recover some lung function with the help, but her lungs were just too damaged to recover. My heart goes out to her family. She was such a cute little girl…
Although the Berlin Heart is a great and life-saving device, it can not work in all cases. And in many cases, it is very invasive. I know that with M, when she was at her worst, they definitely considered it, but said the risks were very high in smaller babies. We were lucky in that each time M seemed to be reaching the point where it would be necessary, she was able to recover and become stable again in a relatively short amount of time. Unfortunately, other babies and children are not so lucky. But, there are few alternatives available.
(1) Size – the Synergy Micro-blood Pump is the size of a AA battery. It can be implanted in a pacemaker-like pocket, so it would not require a large device to be positioned outside the body.
(2) Invasiveness – the Synergy Micro-blood Pump is minimally invasive.
(3) Term of use – the Synergy Micro-blood Pump can be used for long-term intervention. Most of the current systems are only usable temporarily while a child/infant waits for a heart. This pump can be placed and in adults has been used as a long-term mechanism for taking the “load” off of the heart and allowing it to “rest” and potentially even recover.
The timeframe for development of this device is pretty long. They will first redesign the adult device to be used in Children. They will then have to do clinical trials of the device in Children. They will then develop the device for infants and do the same study and testing. But, at least there are options being developed. Because heart problems like M’s – cardiomyopathy in particular – are so rare (M is one of twelve out of 100,000 kids to have it), there is really not much financial incentive to develop devices just for their use. But, with the help of these government grants, it becomes a bit more financially feasible.