A year connected to a heart of Berlin

The parents of a 22-month-old baby hooked up for a year to a mechanical heart hope a transplant will allow them to bring him home, he who is at risk of complications every day.

The story of little Eliam and his parents is one of resilience. The toddler has been in intensive care for more than 400 days and has been surviving for a year thanks to a heart from Berlin.

“We are always at risk of infections, because the cannulas [là où la machine est connectée à son corps] are places of insertion of microbes and that is what scares us. From one day to another, his condition can change completely, ”explains his mother, Sabrina Mercier Laplante, 32 years old.

Little Eliam was born in July 2020 with congenital atrioventricular block: his heart was not beating at the usual rate of 140 to 160 beats per minute for newborn babies. In his case, it only reached 45 beats.

The 1.5 kg (3.31 lb) premature boy was already going under the knife 48 hours after his birth, at the Center hospitalier universitaire Sainte-Justine, in Montreal, to have his first pacemaker fitted to allow him to maintain a good pace. So far, he has received three in the space of 10 months.

But on May 18, 2021, his condition deteriorated to the point where he had to be hooked up to a Berlin heart, a mechanical pump placed outside the patient that circulates blood instead of the natural organ.

The problem is that with this kind of procedure, the patient is at risk of complications, including infections, stroke or bleeding, which can occur without warning.

“My biggest fear was that we wouldn’t go to the transplant. But right now it’s going well, ”said her mother, fingers crossed.

Risks of death

Because it has not been all rosy in the last year: in August, the doctors had to remove from his veins a thrombus – a blood clot – which had formed there. The delicate operation, carried out using a kind of vacuum cleaner, included threats of pulmonary embolism.

“The risks of death were there. They were very present, ”breathes the mother.

Soon after, in October, an infection spread to her abdomen and inside her cannulas. That same month, Eliam vomited a lot of blood when his teeth broke, since his medication prevented his blood from clotting to facilitate passage through Berlin’s heart.

Still, in December, his parents had a glimmer of hope when they learned that a heart might be available for him.

The infant needs a small organ, which greatly reduces the possibilities. In 2021, only four donors were between the ages of 0 and 17, according to data from Transplant Quebec.

“To arrive at an organ donation, it really takes special circumstances. It’s very rare, and that’s why Eliam is still waiting,” his mother continues.

What’s more, it was a sicker young patient who finally received the donation.

A “yes” that changes everything

But^me Mercier Laplante is not discouraged, however: there was an organ donation and that is what counts.

“There is a family who said yes and a life was saved. It made us so happy. Of course, we can’t wait for it to be our turn, ”says the mother.

She launched a petition to the National Assembly to reform and facilitate organ donation, so that they become more accessible. She would like to see more training in this direction. The mother also encourages families to address the difficult subject upstream, so as not to need to do so during a sudden tragedy.

“When a family refuses, the next [don possible] is far and not all patients manage to make it to the end of the waiting list. We keep hope, but it’s a long time, ”she concludes.