November 13, 2009

New Assist Device Brings Joy to One, Hope to Others!

Posted in Berlin Heart, Research and Development at 9:33 pm by bk2nocal

A while back, I wrote this post about a new assist device that was being researched, the Synergy Micro-blood pump.  Today, on the CCF email listserv someone posted this news story about a teen who has been given a new sense of freedom while he awaits a transplant.  This device, the HeartMate xVE, is the first one offering patients the chance to GO HOME while awaiting a transplant!  This is truly a miracle for those who could only look forward to sitting in a hospital bed with a large, cumbersome device to drag around with them if they were to go anywhere in the hospital.  And the fact that these devices could last up to a decade is amazing!  In 2003, 450 people died (out of 2000 on the waiting list) died while awaiting a heart.  These devices can provide an extension that offers both quantity of time and quality of life.  That is an amazing gift!



August 7, 2009

Alternative to the Berlin Heart Being Researched

Posted in Berlin Heart, Research and Development at 1:41 pm by bk2nocal

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.

Enter Circulite and the Synergy Micro-blood Pump for Children and Infants.  The NIH has just awarded a grant to develop this a version of their adult device for children.  The major differences between this and current choices are:

(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.

June 20, 2009

From Germany with Love…The Berlin Heart

Posted in Berlin Heart, Cardiomyopathy, Itty Bitty Baby News, Transplantation at 1:40 pm by bk2nocal

Although M has now stabilized and we think she will be able to go without any “bridging” devices, when there were doubts talk began of devices that will allow her to stay alive even with a non-functioning heart.  It used to be that the only available “bridging” device for heart patients was the ECMO.  Although this machine is effective, the length of time a baby can be on it is limited – usually a matter of weeks.  Because infant-sized hearts are often not available that quickly, another “bridging” device – the Berlin Heart has begun to be used more frequently.  This device allows children to be on the bridging device for longer periods of time AND allows them to live semi-normal lives, moving around, playing, doing all the normal kidstuff they usually would be doing, while waiting for a transplant.  It is truly amazing what medicine technology can do today – and we are thankful for each new device to which we are introduced – as it means that M has a better chance of both surviving and thriving despite her big heart!

Right now, it is looking like M will not need to be placed on the Berlin Heart, as her heart is functioning well enough to not need external interventions.  But, this recent story on a baby in Canada, not only can the Berlin Heart help in cases of bridging, but it can also be used to heal a heart!  If you’re craving more information and an example of the heart being put into use in an infant, you can read this press release from 2007 on an infant in Florida…