Hearts, flowers and chocolates often come to mind when people think of February but most people are not thinking of the heart, as in the organ. February is American Heart Month and with that also comes Congenital Heart Defects Awareness Week, Feb. 7-14.
CHDs are the number one birth defect world-wide and nearly 40,000 babies born in the U.S. will be diagnosed with a heart defect. One family affected by CHD is the Veale family.
Bryan and Jessica Veale of Washington brought home their beautiful baby boy, Eli, in October 2010. Over time, the couple began to notice peculiar things about their new baby that they hadn’t noticed about their older son Zachary.
Little Eli vomited more and slept more than his brother. The day before his two-month appointment, he also wouldn’t eat and it was quickly discovered that he had lost nearly a half pound since his birth. After a trip to Daviess Community Hospital and multiple tests, it was determined that Eli had an enlarged heart.
The Veale’s two-month old bundle of joy was now headed to a pediatric cardiologist in Evansville. After monitoring him through the night, the cardiologist told the family that Eli had a group of heart defects and that the right half of his little heart had not developed because of the defects. Little Eli lives with just half a heart.
A trip to Peyton Manning Children’s Hospital (PMCH) at St. Vincent’s was arranged and at just 10-weeks old, Eli was being scheduled for open-heart surgery. The Veale’s were told that most babies with Eli’s condition do not live to 10 weeks.
“They told us there was a 30 percent chance he wouldn’t come out of the operating room but it was obvious to us if we didn’t do this, he wouldn’t make it through the week,” said Jessica.
While Eli’s time in pediatric intensive care was shorter than most heart babies, he had other obstacles to face. Like most other CHD babies, he needed a feeding tube but it was also discovered that Eli had an intolerance to milk protein and would need special formula.
But over time Eli prevailed. He had physical, speech and occupational therapy to help get him up to speed with other children his age and by September of 2012, Eli had met the basic requirements for his age.
“He had to learn to work with his level of cardiac support,” said Jessica. “Speech therapy was to get him to eat. Most people assume it is only for speech programs but in reality they do so much more.”
Flash forward to April 2013. Eli was scheduled for his third open-heart surgery. A pacemaker was placed, his mitral valve repaired, and his Fontan completion, used to alter the route used to return blood from his body to his lungs to get oxygen, all took place. The surgery took almost eight hours and what was expected to be one to three weeks of hospitalization quickly spanned into seven weeks.
“Eli had several problems during that admission,” said Jessica. “One afternoon his heart was beating more than 220 beats per minute for nearly three hours.”
He had multiple sacs of fluid build up near his chest cavity that had to be drained. Abscesses formed on his sternal incision requiring additional surgery and a wound vac for 12 days to close the area. Eli also acquired a staph infection that led to six weeks of IV antibiotic therapy.
In early June Eli was back home. “We had several physician visits to monitor his status and we had to be very vigilant about any fevers he may run,” said Jessica.
But by the middle of August, Eli was spiking a fever almost on a daily basis and was not acting like himself. He was readmitted to PMCH, the place where he has received all his care since his diagnosis at 10 months.
The staph infection was back. “We had been cautioned that this may happen,” said Jessica. “Staph is a very resilient bug and could survive six weeks of antibiotic therapy.”
Little Eli was also diagnosed with pneumonia and additional sacs of fluid. This time the sacs were “loculated” or instead of one large sac, it was now multiple little sacs, similar to a honeycomb.
After having the sacs surgically removed, he was discharged from the hospital, Eli was sent home with a PICC line so he could continue antibiotic therapy several times each day for the next three weeks.
But just as Eli was finishing the treatments, another setback occurred. Early one morning Bryan heard Eli making strange noises. “Eli was sweaty, cold, limp and non-responsive,” said Jessica. “As we were calling 911, he had a seizure.”
The family had always been concerned with what would happen if Eli needed on the spot treatment. “Our local hospital isn’t used to dealing with children who have hearts as special as Eli’s,” said Jessica. “We were very pleased with treatment he received at our local emergency room.”
After he was stable, Eli was transferred back to PMCH. Tests determined that his sugar had dropped dangerously low causing the seizures. Additional tests led to a change in some of Eli’s medication and he was released after a four day hospital stay. All was well for now but on Christmas morning Eli started limping.
Xrays were taken and no fractures were found but the limping continued to worsen until Eli was crawling rather than walking. On Dec. 30, he was taken back to PMCH. Tests revealed the staph was back again and this time, it was in the bone.
“The staph had been living in his body all the time and we had to find out where it was and fix it,” said Jessica.
Multiple tests determined the infection was living in Eli’s sternum, on the wires used to close his sternum after surgery as well as on the pacemaker and wires and on the graft placed on his heart in April. The big surgery he had undergone in April would have to be redone. His pacemaker and sternal wires would also have to be removed.
On Jan. 21, Eli was scheduled for the surgery. “For the fourth time we sent our beautiful, so perfect for us, brown-eyed boy to the OR to have his chest cut open and his heart stopped,” said Jessica.
But unlike the other times, Eli begged for Jessica and Bryan to not let him go. “He cried out for us, reached for us,” said Jessica.
This time, the doctors were also unable to give an estimate on how long the procedure would take. “Because it was Eli’s fourth open-heart surgery, we knew there would be scar tissue to get through before he (the surgeon) could even do his job,” Jessica said.
Eight hours later, the doctors returned. Eli had spent nearly five hours on bypass. His infected graft was replaced with a bovine vessel to reduce chances for further infection. “He looked great. We were relieved,” Jessica said.
But the relief didn’t last long. Eli had seizures and this time they were different than the ones he experienced the time before. This time, the seizures were just on his left side and several doses of medication were needed to stop them. CT scans showed no bleeding in his brain but an EEG showed he was still having seizure activity. Two days after surgery, Eli still hadn’t fully awakened. Jessica and Bryan also noticed that Eli wasn’t responding the same on his left side as he was on the right. Another CT scan confirmed that Eli, at three years old, had suffered multiple strokes.
In the last few days Eli has started saying words again, moving his left arm and leg and doing other things that are “Eli-like” but he still has a long road ahead. Eli can’t hold his head up or sit up. He doesn’t move or speak like he did prior to the stroke.
“He’ll have a swallow study done soon,” said Jessica. “And ideally, he’ll have three to four hours of therapy a day. We have no idea how long he’ll be in the hospital and no one is able to make any predictions regarding what long-term deficits will present. “
To help cover Eli’s medical expenses, several fundraisers have been set up. Coupon cards for Pizza Hut are available for $10. Eli’s MVP shirts and hoodies are available for purchase by contacting email@example.com, and bracelets will be available soon as well.
Tiffany Gilley, a Thirty-One consultant and Cher Elliot, an Origami Owl consultant are both donating their commission to Eli’s MVPs.
More information on the fundraising opportunities can be found on the Eli’s MVPs Facebook page or by emailing the Veale family at firstname.lastname@example.org.