Miracle at The Children’s: Five month old defies the odds
Montreal – June 12 2009: The parents of five month old Panagiotis Baltzis came to the ER of The Montreal Children’s Hospital (MCH) of the McGill University Health Centre on December 18, 2008. Their son wasn’t putting on weight or growing. Although this was concerning they were not overly worried about his health.
You can imagine the shock Nadia Valerio and Athanasios Baltzis had when the pediatric cardiologist who examined their infant told them little Panagiotis was seriously ill and potentially in imminent danger of dying.
“When we heard this, we thought the doctor was mixing us up with another family. We asked the doctor if he had the right parents because there wasn’t anything seriously wrong with our son,” recalls Nadia.
Little did they know their son was suffering from acute congestive heart failure. His little heart was pumping like crazy, 230 beats per minutes – almost twice the normal rate.
Baby’s pulse was 230 beats per minute
“When they arrived at our ER, Panagiotis’ life was hanging by a thread,” says Dr. Charles Rohlicek, an MCH cardiologist and one of the first people to examine the boy. “Basically, if his heart deteriorated any further he would die within a few hours or for sure within a few days.”
Panagiotis was admitted to Pediatric Intensive Care Unit. He was intubated and on strong medications to control his heart rhythm.
The first order of business was to support the child to keep him alive, the second was to try to figure out what was wrong with his heart. There were four possibilities: his heart muscle was simply not working properly, he had a viral infection that was attacking his heart, he had a problem with his coronary arteries, or he had heart arrhythmia, a problem with the electrical circuitry of his heart. This last option was the least likely.
After a few days in the PICU, under 24-hour supervision, the specialists were able to rule out a viral infection. Doctors came to the conclusion he actually had a heart rhythm abnormality, his heart was beating too quickly, and exhausting itself.
On January 2, 2009, the little guy took a turn for the worse. His heart deteriorated and its rhythm was in the danger zone, the lethal zone. “We were concerned he would die imminently,” says Dr. Sam Shemie. “We approached the family with two options, either we let the little guy go, or we put him on an advanced extracorporal life support system (ECLS). Unfortunately, we had no time to spare. We gave Mr. And Mrs. Five minutes to make a decision.”
Expertise of staff in PICU put to the test
Despite the risks associated with ECLS, the parents opted for this therapy for their son. One of the main complications of ECLS is bleeding, especially bleeding in the patient’s brain. At the same time, Panagiotis was placed on the ECLS, he was also placed on the transplant list. While there was still a small chance that his heart would recover, his health team was increasingly certain he would need a heart transplant.
“Because of the bleeding, a patient can only be on an ECLS for so long. Basically, you keep going as long as you can until you run in to a complication. You hope the new heart shows up before the complication,” says Dr. Rohlicek.
The transplant team at the MCH was put on 24-hour standby ready to collect a donor heart from anywhere in North America. But the staff also knew full well the chances of finding a donor heart that was small enough for a five-month old child were very slim.
As the hours, moved in to days, Panagiotis was doing okay on the ECLS. He was in stable condition. It should be noted that ECLS is very labour intensive. A whole team of MCH and MUHC Perfusionists were monitoring the child around the clock. However, ECLS is the recognized standard of care in this type of case.
Time kept elapsing, the team knew Panagiotis couldn’t remain on the ECLS indefinitely, but unfortunately, no donor heart was available.
Making the bold step to the Berlin Heart
The team treating Panagiotis was now burgeoning. There were about 50 different doctors, nurses, specialists, social workers, child life specialists working with the little boy and his family. The specialists held a conference to develop a new course of action. With the parent’s consent, they decided to take Panagiotis off the ECLS and put him on a Berlin Heart.
“It should be noted, that a Berlin Heart is still considered experimental. It is not considered standard therapy,” says Dr. Christo Tchervenkov. “It is a pretty bold step to move to a Berlin Heart, especially in an infant. There is barely any literature on a mechanical heart being implanted in such small child.”
Scrapper survives implant surgery but has one way ticket to heart transplant
Panagiotis survived the surgery. The health team had bought him some time. He could easily live on the Berlin Heart for months. But a Berlin Heart in a small infant is generally seen as a one-way ticket to a heart transplant. Once the mechanical heart is implanted there is no going back.
“When a mechanical heart is implanted, a big tube is put through the patient’s heart,” explains Dr. Renzo Cecere. “The heart suffers significant damage. Which means a heart transplant remains the only viable option for the patient’s long term survival.”
Well, that is what the doctors thought at least.
The infant was doing well on the Berlin Heart. There were no complications. At this point it was a waiting game. One week slipped by and then two. Still no heart.
But doctors started to notice something rather odd. Panagiotis’ heart had started to squeeze again. Basically, he had two heartbeats: the Berlin Heart and his own.
Good, but unexpected news. This simply is not supposed to happen. His heart was supposed to be non recoverable. But there it was squeezing away. But was it strong enough? Could it pump enough blood all on its own? There were a lot of questions and no easy answers.
The specialists had to figure out if the boy’s heart could sustain him, but they could only turn the Berlin Heart down to 40% of output. Would his heart be able to pick up the slack?
Flying by the seat of their pants
There is no accepted protocol for how to do this; there were few reports of an infant child being successfully weaned from a Berlin Heart. But things did look good. His heart was pumping blood.
“Sometimes, you can’t go by the book, because the book hasn’t even been written,” says Dr. Rohlicek. “But thanks to the expertise found in a quaternary and tertiary care hospital such as The Montreal Children’s, the team can make an educated guess based on their past experience.”
The trouble with this educated guess was: what if the doctors were wrong? They wouldn’t simply be able to hook Panagiotis up to the Berlin Heart again. He either had to stay on the mechanical heart and wait for a donor heart, or he had to be taken off the Berlin Heart and hope his heart would bounce back in to action.
Leap of faith
After consulting Panagiotis’ family the team decided to make the leap of faith, remove the Berlin Heart and cross their fingers to see if the little guy’s heart would pick up the slack.
On January 24, the Berlin Heart was removed. To everyone’s surprise and delight, his heart was able to beat on its own and with sufficient strength that the little Panagiotis could be removed from all forms of life support.
The infant woke up on January 29, and his mother was once again able to hold him in her arms. During this whole ordeal, the little guy had two teeth emerge and grew an inch. He was alert and seemed to have escaped neurological damage.
He goes home on February 19. In front of a dried up Christmas tree his family celebrates a late Christmas.
The team at The Montreal Children’s Hospital will continue following this little boy very closely. A few times, already his little heart began to beat at an alarmingly fast rate. But drugs are now controlling his arrhythmia. He’ll have to undergo several tests to try to monitor the electrical problem with his little heart. Ultimately he will undergo an electrophysiological intervention in the cardiac catheterization laboratory at The Montreal Children’s Hospital to eliminate the problem permanently.
On June 29th, Panagiotis will celebrate his first birthday. A milestone for him and a milestone for his parents and a milestone for the team at The Montreal Children’s Hospital of the McGill University Health Centre.
From everyone at The Montreal Children’s Hospital - Happy Birthday Panagiotis!
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