A post-surgical nightmare turned ‘miracle’
Doctors say the results would have been catastrophic had the then 4-year-old received heart surgery elsewhere.
In the words of 4-year-old Max Weigel, “I went to sleep and woke up without any words.”
This simple description downplays the experience of a young boy who has overcome tremendous odds. Today, three years after significant health challenges, Max’s parents, Noël and Nick, share his story of strength, perseverance and their good fortune to be at the right place at the right time, with the right health care team.
Challenges from birth
Max was born with a congenital heart defect known as an atrial septal defect – a hole in the upper chamber of his heart. An ASD is the second most common congenital heart defect and accounts for 10-15% of all congenital heart defects. In many cases, because the condition causes no symptoms during infancy and childhood, it can go undetected. An ASD can occur in a healthy heart or can be associated with other heart defects. In Max’s case, a second congenital heart condition — left ventricular non-compaction cardiomyopathy — would make his situation more complex.
The Rockford, Michigan, family sought the care of Grand Rapids pediatric cardiologist Ronald Grifka, M.D., who recommended surgery to repair the hole in Max’s heart once he was a few years older.
Because of Max’s two heart conditions, Grifka recommended surgery be performed at University of Michigan Health C.S. Mott Children’s Hospital, where a pediatric cardiothoracic intensive care unit was available in case of any complications.
“By having cardiac surgery at Mott for closure of his atrial septal defect, Max would have all the additional specialists and resources needed to care for issues that might develop related to left ventricular non-compaction, including arrhythmia, heart failure and stroke,” said Grifka. “As much as we strive to prevent any of these issues from developing after surgery, they can happen.”
A successful surgery
The Weigel family was onboard to have Max’s surgery at Mott. The procedure would be performed by pediatric surgeon Richard Ohye, M.D., and would involve opening Max’s chest and placing sutures to close the hole in his heart. It was a relatively straightforward procedure that was expected to go smoothly.
To the relief of his parents, Max recovered extremely well following surgery, which took place on April 25, 2019.
“Within a short time, he felt great,” said Noël, noting that he was scheduled to go home sooner than expected.
An unexpected challenge
But two nights after surgery, as Noël lay by her son’s side, Max began acting erratically.
“I asked him what was wrong and tried to talk with him, but he didn’t answer. When he began to groan, I knew something was very wrong.”
Noël recalls running to get help and watching as the room became flooded with doctors and medical staff — all within minutes.
“It was a whirlwind from there.”
With the medical team working to determine next steps, Noël and Nick were bracing for the worst. But they never expected the “worst” would be news that their young son had suffered a massive stroke. A blood clot was blocking blood flow to his brain.
“Max couldn’t speak and wasn’t able to feel the right side of his body,” Nick recalled. “His vision was also impacted. We felt helpless when we saw the terror in his eyes.”
To further complicate Max’s condition, because he had just undergone surgery to close the hole in his heart, he was not eligible for the standard of care for stroke victims: an intravenous clot-busting medication known as tPA, or tissue plasminogen activator.
The only option was an endovascular thrombectomy – a clot retrieval procedure using surgical tools designed for adults. The neurosurgeon on call that night – Aditya S. Pandey, M.D. – would perform the minimally invasive procedure that traps and removes the blood clot responsible for causing a stroke.
During a thrombectomy, doctors thread a catheter into an artery in the groin or arm and navigate it up to the blocked artery in the brain. A device known as a stent retriever is then inserted through the catheter to trap and remove the clot.
“In Max’s case, imaging revealed that a significant portion of the left side of his brain was at risk of being irreversibly injured due to a major brain vessel being completely blocked with a clot,” said Pandey “We placed a catheter in an artery in his right leg and navigated to the left carotid artery. We then placed a smaller catheter to reach the clot, allowing for the stent retriever to be deployed and the clot removed. Within 24 hours he began to improve. Without the surgery, he would have been disabled for life.”
One of the first centers to perform a thrombectomy on children, Pandey and his team are leading the way in the treatment of young patients through the use of endovascular techniques.
“I have the great fortune of working with an extremely talented team which allows us to have expertise in every aspect of cerebrovascular care,” said Pandey.
The procedure was successful, resulting in complete restoration of blood flow to the area of Max’s brain where the clot had been.
“Despite being performed on children only a handful of times, a thrombectomy was our only option,” said Noël, who pointed out the “miracle” they discovered that night.
“Dr. Pandey was the doctor on call and agreed to perform the procedure even though it posed significant risk,” said Noël. “As an expert in this type of surgery, if he hadn’t been on call that night, we may not have had a successful outcome.
“We put all of our trust and faith in Dr. Pandey as our son was taken in for the procedure,” said Noël, noting the commitment of a dedicated nurse who “stayed with us the entire time during the middle of the night as we waited for word about our son. She was our lifeline.”
Hearing the news
Word finally came.
“When Dr. Pandey came out of surgery, he told us, ‘He’s fine. We got the clot. He’ll be OK,’” said Nick.
Still, the family didn’t know what kind of challenges they would be facing as they waited for Max to come out of sedation.
“This was a massive stroke and required a lot of testing,” said Noël. “Max was heavily sedated for 12 hours after the procedure in the pediatric cardiothoracic intensive care unit.”
As the Weigel family would soon learn, Max’s right side was partially paralyzed and his speech was affected. “Physical therapy started on day two, along with occupational and speech therapy,” said Noël.
Despite these challenges, Noël and Nick were counting their blessings.
“Dr. Grifka recommended we take Max to a place where there was a pediatric cardiothoracic intensive care unit,” said Noël. “This made such a remarkable difference in Max’s outcome. We were told he would be paralyzed if it hadn’t been for Mott and Dr. Pandey.”
“Mott/U-M Health had the rare expertise — specifically Dr. Pandey and his team — to perform the thrombectomy procedure and restore flow to his brain,” said Grifka. “Because of the thrombectomy procedure, Max is not permanently paralyzed. Very few children’s hospitals could have done this procedure. He is back to racing his bicycle and doing the activities all kids want to do.”
Mighty Max today
Max has had to learn how to speak again and went through extensive physical therapy to strengthen his right side, said Nick, who added: “He’s a strong boy. When he couldn’t stick out his tongue as requested by the speech therapist, he used his left hand to pull it out. He figured out a way to do it.”
“He also switched his dominant hand from right to left to get things done,” said Noël. “He’s a hard worker. He won’t stop.”
Max is now doing all the things 7-year-olds do, including playing soccer and BMX racing, where he’s earned the nickname, Mighty Max.
“He’s now ranked number 20 in the country out of all kids in his age group,” according to his proud parents. “His hard work is paying off.”
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