'Miracle Michael': 4-year-old Edina boy has beat the odds
MINNEAPOLIS (FOX 9) - While many of us take a breath of fresh air for granted, for Michael Borg nothing in life has come easy.
On this day late last summer, Michael hardly made it to the foot of his driveway before his home nurse, just as she’s had to do countless times before, calmly suctions a blockage in the tracheostomy tube in his neck just so then 3-year-old Michael could breathe again and continue on.
"He has been through a lot, and he's proof that – okay, there can be joy in his suffering," says Michael's mom, Tricia Bord. "He just flashes a smile and lights up a room."
Back in 2019, Tricia and Brian were all smiles themselves, and expecting their fifth child, when a routine 20-week ultrasound visit changed everything in their universe. Doctors could immediately see Michael had an extremely enlarged bladder and was gravely sick.
"That timeframe was really humbling for us because we felt there was really nothing we could do other than pray," says Brian.
Pray the family did
Suddenly, over the course of two days, Brian and Trica were launched into 18 hours of specialist appointments at the University of Minnesota M Health Fairview, and Mayo Clinic. Barely halfway through the pregnancy, they learned that Michael likely wouldn't make it.
"I remember sitting in the doctor's office and it was one of the many consults that we had, and one doctor I was just like, 'What do you think?' They're giving us a 5% chance of him even surviving surgery," says Tricia. "And he turns to me and he's like, 'Someone's got to be in the 5%. Why can't it be him?' And I told myself that every day, the rest of the pregnancy was like, 'Someone's got to be in that 5%.'"
"I just fight for those babies," says Dr. Rodrigo Ruano. He was the world-renowned fetal surgeon the Borg's were referred to.
Dr. Ruano was working at the Mayo Clinic at the time, before more recently becoming the director of the UHealth Jackson Fetal Care Center and division chief of UHealth Jackson Maternal-Fetal Medicine in Miami, Florida. Dr. Ruano has operated on many babies still tucked inside their mother's bellies and recalls Michael’s situation with severe bladder obstruction as being particularly challenging.
"There’s a type of obstruction, a tube I mentioned, the urethra, there’s a missing part," says Dr. Ruano. "It’s very challenging. Those babies, usually, they don’t survive, they don’t, because those are the most severe forms of bladder outlet obstructions... and Michael had this."
That day Michael did beat the odds. Surviving the first in-utero surgery, followed weeks later by a second.
"I am so proud to be part of Michael's journey," says Dr. Ruano. "We talked to them at length, knowing his life would not be easy."
The next few months were a heart-breaking blur of Tricia on bedrest trying to prevent her water from breaking, and Brian juggling the household and four other kids under the age of 6 with the help of family and friends. Between exceptional medical care and leaning on their faith more than ever before, Michael made it to full term. However, when childbirth came, Brian and Trica were warned: Don’t expect to hear him cry.
"It was really not what we were expecting because we were told the worst; we were prepared for the worst," says Brian.
Michael defied the odds again! Within seconds, he was baptized and moved from mom’s arms to the neonatal intensive care unit at Masonic Children's Hospital, where Tricia wasn’t sure she’d see him alive again.
"No one thought he was going to even make it through the night," says Tricia. "And he turned the corner, and he made it through the night, and he made it through one thing after another."
Michael's prune belly syndrome was part of the ripple effect caused by the in-utero urinary tract obstruction, and a glaring reminder of the severely damaged kidneys. A dialysis catheter was placed at just two days old, essentially solidifying that Michael would, as soon as possible, need a new kidney.
"As soon as he was born it was pretty obvious that his kidney function was low," says Brian. "It was all of the combination of sickness that you could see."
The first few weeks, Michael's medical team worked to combat collapsed lungs multiple times, along with other severe complications. Meantime, Brian started to have early thoughts of becoming a kidney donor himself.
"It was at that moment that I started thinking about it, and not that I knew any of the details of when and how," says Brian through tears. "I thought if I got the opportunity to do it, why not? And what a gift that you could give your kid."
Yet while Brian was ready for a kidney transplant, Michael’s tiny body was far from ready to receive it. At times, Michael was too fragile to even move to an operating room, and surgical procedures were performed bedside. In addition to kidney failure, cardiac issues, underdeveloped lungs, and cerebral palsy, doctors found cancer twice. The list of his medical complexities goes on and on. By the time he could surprise his siblings at home, Michael was 8 months old, and both his kidneys and part of his liver would soon follow. It was the peak of the pandemic in 2020, and 24-hour nurse care came with his medical plan.
"Thank God Trish is a nurse," says Brian. "That is where that came so much in handy because we really did have to create what they had in the hospital, essentially an ICU unit in a room."
"Here's his bedroom, lots of machines. Here's the dialysis cycler, we call it the machine," says Tricia, giving a tour of their Edina home. "You will see a lot of this in the ICU. And we actually bring a lot of our machines with us to the hospital, especially during cold and flu season they are like bring your ventilator, when there’s a lot of kids that are sick they'll say bring some of these things that are a little more special to Michael."
Despite countless scary moments over the next few years, and a couple of emergency ambulance rides to save Michael’s life, the "beautiful chaos of life" as Tricia calls it, continues. Morning and evening routines include multiple hours of medications, dressing changes, and setting up for Michael to hopefully sleep while receiving roughly ten hours of dialysis every day. Through all of it, Michael rarely stops smiling, especially when surrounded by his three older brothers and older sister, often serving as his best motivators of all.
"The kids, it’s been a sacrifice for them and there’s been a lot of beauty in it," says Tricia. "Our conversations with them center around this is what love looks like. Sometimes we have to sacrifice, or we are called to love when it’s inconvenient and it’s hard and you can’t do what you want to do and that’s what being a family looks like and we are there for each other."
Last summer, when Michael reached a critical milestone of being cancer-free for a full two years, Brian learned he was a perfect match to donate his kidney to his son. While the Borgs have appreciated dialysis since Michael was born, it has its limitations and a transplant meant a chance for him to no longer rely on it daily.
"He hasn't actually grown in the last six months, and so it's become more apparent the impact of being on dialysis has had," says Brian.
Perfect match
Preparation for the transplant was intense, including even more weekly doctor visits than usual. Finally, Sept. 6, 2023, was transplant day. At 4:32 a.m., Michael was again taken to Masonic Children's Hospital, while his dad arrived at M Health Fairview’s East Bank Hospital across the river.
"It was three years of waiting for the opportunity, waiting for that phone call. We were so close multiple times, and we’d get that phone call that he was not quite healthy enough. So, to finally get that phone call we got it was just exciting. I was ready to go."
Dr. Vanessa Humphreville, M Health Fairview's Director of Living Kidney Donation, took the lead for Brian’s surgery.
"My portion was the easy portion, in my opinion, he had the challenge," says Dr. Humphreville.
While Dr. Srinath Chinnakotla, Director of Living Kidney Donation, performed Michael’s. As they explain, it is extremely rare for surgical teams to even attempt a transplant on someone with a trach like Michael required in his neck for better breathing because of the much greater risk for infection – exactly what you don’t want during an organ transplant.
"All these things, the tracheotomy, the vesicostomy, the fact that he had cancer in the past, chemotherapy put him at very high risk." said Dr. Chinnakotla. "But having said that, as I mentioned, despite all this he was so cheerful and kind waving to a stranger on the elevator. So if we were going to do it on anyone, it was Michael."
Brian’s surgery went exactly as expected, within roughly two hours.
"What’s super important for these kiddos their first transplant lasts them the longest. One of the ways we do that, we match them immunologically. It just so happens to work out that Michael and Brian were super closely matched, what we call a zero eplet. So we do think this kidney should last him a long time," says Dr. Humphreville. "I think the average is 15-20 years. With this next generation of eplet matching, I would hope this would last closer to 25-30 years."
As expected, Michael’s surgery to receive his dad’s kidney took a lot longer. Roughly seven hours total with scar tissue from previous surgeries adding to the complications.
"I spent most of my day by the window looking across the river at the hospital Brian was in while Michael was in surgery," says Tricia. "It was pretty hard to have two loved ones in surgery at different times in different places."
It was all worth it. The kidney transplant was an absolute success, and proving it, Michael was cruising the hospital hallways on his tricycle within a few days.
"Long surgery, but quality is more important than time," says Dr. Chinnakotla.
Within two days, Brian had a brief moment to celebrate being released from care across the river. Sore for a couple of weeks, and instructions to take it easy for 10. His first stop was a reunion at Michael’s bedside.
"It was just unbelievable," says Brian. "We planned for his death multiple times, so to be able to get to this point was a huge milestone."
"Michael’s stay was actually 12 days, which is actually one of our shorter stays in the hospital," says Tricia.
Over the course of the next six months, Michael’s medical rollercoaster continued. While the kidney was doing well, life, winter, common colds, post-transplant medicine adjustments landed Michael in the hospital multiple times. By March, Michael finally stayed out of intensive care for two full weeks and started to make some of his biggest strides. Standing two inches taller since September, stronger than ever and clearly more engaged with his eye contact, Michael is making some of the post-kidney transplant progress his parents used to only dream about.
"Just the other day he took his first step on his own and from the very beginning we were told he’s never going to be able to do that, six months later never going to be able to do that, never going to do that," says Brian. "So to be able to do that is pretty cool."
These days, Michael’s time is spent with speech therapist, and music therapists. Plus, his round-the-clock nurses still rotate through the house on 12-hour shifts nearly every day.
"Are you feeling happy today or sad?" asks Kendall Alexander, of Alliance Music Therapy. Within seconds, Michael points to the happy card.
His parents lost track of the number of surgeries long ago, but are thankful for everyone. "Every scar has a story," says Tricia. By most typical measures, Michael's life still is far from easy, but the Borg’s wanted to share their story in part as a way to show the positive impacts living donors can have.
The Borg’s also hope this story serves as a way of saying thank you to the collaborated efforts between the University of Minnesota M Health Fairview, Mayo Clinic, and dozens of specialists, nurses, nephrologists, therapists, family, and friends who have played invaluable roles in Michael’s first four years of life. And for the rest of us, a reminder to make the most out of whatever life we are given and keep smiling. Just like the little boy growing up down the street living up to his nickname "Miracle Michael."
"I hope that anyone who is going through similar situations, whatever the circumstances may be, may be able to listen to this story and just receive that hope," says Brian. "Keep fighting just like Michael does."
"We will celebrate his life every chance we get."
Become a donor
According to LifeSource and the Organ Procurement Transplant Network:
As of today, May 9, 2024, there are 2,127 Minnesotans waiting for a transplant. Of those, 1,789 are waiting for a kidney.
Right now, 57% of Minnesotans holding active licenses or state IDs have registered; 43% have not. Source: DMV data provided by the state to LifeSource.
In 2023, 299 living donor transplants were completed in Minnesota, and Michael was one of them.
To learn more about organ donation or to register to become a donor, you can visit your local DMV or online.
