Once the decision had been made to attempt to put Laura on a Berlin Heart, we first had to make sure she was stable enough to undergo the lengthy surgery. She remained on ECMO while we waited to see how her lungs would do with a little bit of time – if they did not improve, we would not be able to go ahead with a Berlin Heart as it does not add oxygen to the blood – it requires normally functioning lungs. If her lungs did not get better the plan would be to put her on a Centrimag LVAD like she had been on before but hook up an oxygenator to the circuit – once her lungs improved, she could be switched over to the Berlin heart fairly easily.
While we were waiting for Laura to improve just enough to make the switch from ECMO to the Berlin Heart, the surgeon came to see us. This man who had been made out by most people to be a cold man (maybe not cold but aloof at least) came up to me, put his hand on my shoulder and said he was sorry that this happened again. He looked at me and said
Let’s just get her a new heart, this one’s not working.
It was so nice of him to come by – he is not one who tends to check up on parents very often – he does, however, follow the patients very closely. He likes to be behind the scenes but if you watch closely enough – you’ll see his kind heart as he watches these kids improve.
On November 18th, 2016 the decision was made to get Laura in for surgery. She would be the first and only case of the day – the surgeon knew that it might be tricky due to the vast amount of scar tissue from her growing number of surgeries. We met with our surgeon and the head of the Artificial Heart Program – a tall, athletic German man who had the greatest accent of all time – Dr. H. the two of them explained that until they got in, they would’t know whether Laura would require a Berlin Heart LVAD, biVAD(an LVAD and RVAD – for both sides of the heart) or a centrimag. They would assess the function of her right ventricle to see if it could carry out it’s job on it’s own and would assess her lung function off the oxygenator to see if they could keep up.
Best case scenario – Laura comes out of surgery on a Berlin Heart LVAD only – a biVAD brings a much larger risk.
Berlin Heart EXCOR – explained
Now that I’ve spent all this time talking about it, let’s really explore what the Berlin Heart EXCOR is.
The Berlin Heart is not new technology, it has been around since about the 1990’s and has had large success. Since that time, it has gone out of style in the adult population with the invention of implantable VADs that allow a patient to go home and live a relatively normal life, albeit carrying a backpack with the battery for their heart everywhere they go. In small children and babies – the Berlin Heart is still the only option that allows them to move around and be fully awake and alert – on ECMO, the patient has to lie paralyzed and sleeping.
An LVAD is a Left Ventricular Assist Device – this takes over the function of a failing left ventricle, allowing the rest of the body to receive the oxygen-rich blood that it requires to function properly. It pumps blood in the same way that a heart does – with a pulse. On ECMO and on the centrimag LVAD, the blood is pumped in a continuous circuit, so the patient does not have a pulse. The Berlin Heart, however, pumps at a specially calculated rate which gives the patient that same pulse. When Laura was on the Berlin Heart, her heart rate was usually around 140 bpm while her pulse was sitting at 65 bpm -it was weird to see the difference as in a normal person these numbers are the same.
There are some risks, of course, to having a Berlin Heart. Because of the plastic tubing (cannulae) and pump, the patient has to be on blood thinners to be sure that clots don’t form. Laura was on bivalirudin and aspririn while on the Berlin Heart. With anticoagulation/blood thinning, the patient is at risk of bleeding both internally and externally – this brings about a 30% risk of stroke at any given moment.
The Berlin Heart is a small pump (pictured above) that is connected to the left ventricle and then connected through a tube of pressurize air to the battery and control center called the Ikus. The Ikus is a large contraption which houses the battery and the computer main frame that controls the function of the Berlin Heart.
At around 07:30, Anesthesia came to get Laura for her surgery. As always, we walked her to the OR and said our goodbyes. We knew that the surgery would be a while so we went for coffee and then wandered around for a while before returning to the waiting room.
We waited all day. So long that it was 17:30 by the time the surgeon came out to tell us it was a success. It took two hours to open up her sternum because of all the scar tissue. Bleeding had been an issue throughout the surgery and it was still not under control – they had stopped all of her anti coagulation from ECMO and wouldn’t restart it for the Berlin Heart until the bleeding had lessened significantly.
We were so interested in all the bleeding and everything else that we had forgotten to ask what he had actually put in! When Laura was wheeled by, though, we found out that the best case scenario had happened – she was on the Berlin Heart LVAD.
We were able to go see her about an hour later and saw the Berlin Heart for the first time – it was really cool. You can actually see and hear her heart pumping and can see the blood as it moves from the pump back into her body – it is quite amazing.
They weren’t thrilled with the positioning of the cannulae but it was the best they could get – the only way to get the pump to fill completely was to have it tilted towards the left side at an angle – not ideal but it was working and her blood pressure was stable enough. The plan was to take her back to the OR tomorrow to close her chest and readjust the cannulae slightly to get a better angle – they couldn’t do it today because after 10 hours in the OR, it was time to call it a day.
For the first time in a few days – we were filled with hope.
On the Berlin Heart Laura should be able to start learning how to sit, crawl, walk, play, anything she wants – she hadn’t ever really had that chance before!
We were thrilled when we saw another Berlin Heart patient, a 7 year old, riding her bike down the halls with her Berlin Heart hanging beside her and a nurse pushing the Ikus behind her.