When Max and Shana arrived at Boston Children’s Hospital last year with their young son, Joey, their care team “made us feel a lot less special,” says Max. “And that was a great thing.”
Joey was born with megacystic-megaureter syndrome, a urinary tract anomaly that is caused by high-grade vesicoureteral reflux, or the backward flow of urine into the ureters and kidney. The constant backward flow results in massive stretching of the kidneys, ureters, and bladder, which impairs the ability of the bladder to empty. Physicians in the family’s home state of New York explained that the condition was something that Joey might always have. He would need to be catheterized every time he needed to urinate — possibly for the rest of his life.
“We had heard that this diagnosis was so rare that it was like winning the Mega Millions jackpot,” says Max. “We felt like we were really different, and not in a good way.”
A second opinion — and options
Joey’s clinicians in New York believed that surgery could be an option for him, but they admittedly had little experience with megacystic-megaureter syndrome. When Joey was a few months old, Max and Shana decided to get a second opinion. Max’s friend, who was doing his fellowship at Boston Children’s, urged them to contact Dr. Carlos Estrada, chief of the Department of Urology.
Despite its rarity, Dr. Estrada and his team were very familiar with megacystic-megaureter syndrome. They assured Max and Shana that not only could Joey’s condition be treated surgically, but it would involve a relatively straightforward procedure that would eliminate the need for multiple catheterizations a day.
“It was the first time we felt confident in our options,” says Shana.
While the couple weighed those options, Dr. Estrada served as reassuring sounding board. “He made us feel like he was just there to help, to be an advisor and answer questions if needed. There was no pressure to choose him as Joey’s urologist.” says Max. “And he didn’t treat us like Joey’s situation was strange or different — just rare.”
Another level of care
It was that sense of support that led Max and Shana to ultimately decide to pursue surgery with Dr. Estrada and his team. Like any parents, they were still “stressed out of our minds” as the procedure date approached, admits Shana. Their nerves were calmed a bit by the staff’s confidence — and compassion. For instance, during pre-op testing, a nurse noticed that Joey sucks his left thumb, so she inserted the IV into his opposite arm.
Shana and Max were also impressed that the team was able to arrange for a rabbi to enter the operating room so a circumcision could be performed prior to Joey’s surgery, in keeping with the family’s Jewish faith.
“Just little details like these made us feel like Joey was a VIP,” says Max. “It was another level of care.”
Paying it forward
Following a successful surgery in January 2023, Joey no longer needs to rely on a catheter or take antibiotics to prevent UTIs. Now 16 months old, he’s “the happiest, most mischievous kid,” says Shana.
Meanwhile, Max is committed to paying the care and support Joey received forward: In November, he’ll run the New York City Marathon as part of Boston Children’s Miles for Miracles fundraising team. “If our experience isn’t motivation to run, what is?” he says. “It’s a great opportunity to tie a bow on things.”
The marathon will also help mark a sense of closure for Shana and Max, who not that long ago believed that their son might require a lifetime of medical support. “Now we’re coming up on a year since Joey’s surgery,” Max reflects. “And the beauty of it is, it already feels like it’s in the distant past.”
Learn more about the Department of Urology.
Related Posts :
Bladder surgery after Ewing sarcoma helps Paralympian get back on the slopes￼
Thomas Walsh’s email signature includes the phrase, “No struggle, no progress.” It’s a motto that Thomas, 27, has lived ...
Building a better bladder: Reconstructive urologic surgery helps Mikey thrive
When Mikey Tibbetts’ parents, Johanna and Matt, take him trick-or-treating, the process can last for hours. “He knows everyone and ...
Lifechanging surgery brings Ann-Raleigh relief from VUR — and some new ‘besties’
When Ann-Raleigh Murthy travels to Boston from her home in Louisiana, she has a list of “must-dos.” Among the highlights: ...
On her own terms: Robot-assisted procedure gives Sage more independence
At 19, Sage Nault has had multiple surgeries, aimed at addressing challenges related to myelomeningocele, the most severe form of spina ...