Teamwork helps ‘little fighter’ overcome rare condition at Levine Children’s Hospital
When John Sanders describes his first and only newborn son as a little fighter, the father of two girls has no trouble offering up proof.
“At one point, we didn’t know if he’d even be born,” says Sanders. “He flatlined for eight minutes when he was born, but he eventually came back. And we were told he may not live several times after that, but we’ve still got our little angel – yes we do.”
Affectionately known as “J5,” and formally known as John Sanders V, baby John shares his name with four generations of determined men. So, when Sanders learned his baby boy had a bulge on the main pumping chamber of his heart, he hoped baby John would be a fighter – just like his forefathers.
An Unusual Discovery
Before he was born, baby John was diagnosed with an aneurysm on his heart’s main pumping chamber: the left ventricle. Doctors at Carolinas HealthCare System’s Levine Children’s Hospital say only about a dozen cases of this type of aneurysm have been documented worldwide, and to find it before he was born is quite unusual.
As baby John developed in his mother’s womb, his heart created a sack, or chamber, that allowed blood to flow where it wasn’t supposed to flow. Instead of efficiently sending blood to his body, baby John’s heart wasted energy sending blood back and forth into the chamber, making his heart work harder and putting him at risk for blood clots forming in the aneurysm.
On February 7, just months after he was born, baby John had surgery to correct his rare heart defect.
Born a Fighter
Baby John is the son of Carolinas HealthCare System teammate Luphinia Digsby, a certified registered medical assistant at Cotswold Pediatrics with nearly a decade of experience.
She gave birth to baby John and his twin sister, Johana, on Aug. 24, 2016 – about a month premature – right around the time she watched her first set of twins (also a boy and a girl) graduate from college.
Before the twins were born, baby John was diagnosed with fluid around his heart and Dandy-Walker Syndrome, a defect that affects brain development.
“They didn’t notice anything wrong with his sister, so their main focus was on him, and the more they looked, the more it looked like he was having trouble with his heart,” says Digsby. “I knew I could go to one of my appointments and he might not be there anymore, so if I didn’t feel any movement, I became frantic.”
Nurse Lends a Hand at Home
During Digsby’s pregnancy, she also dealt with hyperemesis gravidarum, a condition that causes severe nausea, vomiting, weight loss, electrolyte imbalances and dehydration.
“A lot of complications came up during my pregnancy,” says Digsby. “I saw my doctor two to three times every week, I had to be cared for by a Healthy@Home nurse, and my babies weren’t getting their necessary nutrients.”
Part of Carolinas HealthCare System, Kerry Bloomingburg is a former neonatal intensive care unit nurse. She started to care for Digsby during her ninth week of pregnancy and she continues to care for baby John.
“I spent many years caring for infants in Levine Children’s Hospital’s NICU,” says Bloomingburg. “So to be on this end of the care spectrum as a home health nurse – and to be able to care for the whole family – has been the most amazing experience.”
Teamwork Helps a Tiny Heart Make a Comeback
Paul Kirshbom, MD, chief of pediatric cardiac surgery at Levine Children’s Hospital, is one of two surgeons who performs heart surgery on newborns, children and adults born with heart conditions.
He learned about baby John in late 2016, shortly after baby John was diagnosed and the family went to Sanger Heart & Vascular Institute for more answers.
“Most of what we did to treat baby John was fairly standard, but the operation was a little unusual because his condition is so uncommon,” says Dr. Kirshbom. “To have identified this aneurysm in utero (before he was born) and have the child born with it and survive it is even more rare.”
The procedure involved putting baby John’s heart to sleep. First, doctors hooked him up to a machine to control – and temporarily stop – his heartbeat. Then, they essentially patched the chamber.
While it’s hard to predict how baby John’s quality of life would have been without the surgery, Dr. Kirshbom says once he recovers from the operation, he should live the life of a normal kid.
“But we couldn’t do any of it without the tremendous support of our entire medical team,” says Dr. Kirshbom. “Anesthesia, perfusion, physicians’ assistants, post-operative care doctors, ICU and floor nurses, cardiology – all of those things are critical to a good heart operation outcome. We excel in all those areas and more, and that’s why our outcomes are so good for pediatric heart surgery.”
Guiding a Family Through Heart Surgery
Digsby says she was relieved knowing she could get help locally, and her experience has made her even more proud to work for Carolinas HealthCare System.
“I feel like everyone grabbed my family by the hand and let us know we’d get through this no matter what – that, together, we’d get it done,” she says. “As I sit here playing with my little ones, I think about all that we went through to get here. Then I think about my Healthy@Home nurse, Kerry Bloomingburg. She was that one special person outside of our family who pushed us and reminded us – especially me – to never give up. She is simply a wonderful. She is our human angel.”
Baby John left the hospital February 11, is home with his family and doing great.