Despite living with heart disease, three-year-old Ethan Nuncio does not let his disability stop him from living the everyday life of a curly-haired boy. The youngest son of Roxanne and Fernando Nuncio of Charlotte, Ethan was diagnosed prenatally with congenital heart disease.
Roxanne was just 25 weeks pregnant when the couple found out through a routine 3-D sonogram. Roxanne was then referred to a cardiologist where, after an echocardiogram of Ethan’s heart, they learned he had a complex heart disease.
“I still remember the day the cardiologist gave us the news. We were devastated, heartbroken and couldn’t hold back tears. To think of our unborn baby already with so many health issues,” said Roxanne.
As a mother, Roxanne immediately blamed herself, thinking she could have done something different during her pregnancy. However, her doctor reassured it was something beyond her control.
“We knew in that moment that we had to put all of our faith in God and trust in Him so that He will take care of us and our baby.”
After Ethan’s diagnosis, Roxanne saw a specialist once a week every week until Ethan was born to watch for signs of heart failure.
On May 25, 2016, Roxanne gave birth to her youngest son. “He had no signs of a baby who had heart disease,” she said.
Open Heart Surgery
To date, Ethan has had three open-heart surgeries and five cardiac catherizations. He also received speech, occupational and physical therapy until he turned three years old last year.
When babies are born, they have a little opening in their heart which closes up after 24 hours. In Ethan’s case, he needed an arterial line which had a medicine to keep that opening until his first openheart surgery on June 7. He was only two weeks old at the time. Doctors placed pulmonary artery (PA) bands on his pulmonary arteries to restrict blood flow. About four days later, Ethan was having complications with low oxygen levels and doctors couldn’t figure out why. After a cardiac catherization, doctors found one of the PA bands had tightened. They tried everything to avoid having another surgery so soon. Three weeks later, Ethan had his second, unplanned, open-heart surgery.
Ethan was then able to go home at five weeks old. When he turned six months, he had his third open-heart surgery.
His history includes superior-inferior ventricles meaning his left and right ventricles are switched. He also has hypoplastic left heart syndrome which means the left side of his heart did not develop completely so it’s smaller than it should be. Ethan has transposition of the great arteries which means the arteries that carry blood from the heart to the lungs aren’t connected as they should be. They are reversed. His aorta is connected to the right ventricle when it should normally be connected to the left ventricle, and the pulmonary artery is connected to the left ventricle when it should normally be connected to the right.
Ethan also has tricuspid atresia which the tricuspid heart valve is abnormally developed. This defect causes Ethan to not get enough oxygen to his body so he tires easily, often short of breath and sometimes will have purple- tinged skin. His normal oxygen range is between 75-85. He also has a restrictive ventricular septal defect which means little blood is able to flow from the left side of the heart to the right side and has aortic arch hyperplasia which means there is blockage in the aorta which also allows little blood flow.
“It’s hard knowing our son has gone through what he has and what he will go through in the future and there’s nothing you can do about it, but pray,” said Roxanne. “You wish to be able to take his place because no child should endure or experience such things. We believe we would not have been able to overcome and continue this without our faith, family and church family.”
Living with CHD
Ethan will live with congenital heart disease for the rest of his life as there is no cure. He sees a cardiologist routinely every five months. Roxanne and Fernando monitor his oxygen saturation and BPM at home. He also takes daily medication.
“It has become our new norm,” said Roxanne. “Sometimes, when we’re with family or friends, we forget that our normal is not their normal, and we have to reassure them that the color of his skin or his shortness of breath is ok for him.”
However, Ethan does not let his diagnosis stop him from running around with his two older brothers.
“They also understand that when they are playing with him, they need to stop so that he can rest and catch his breath,” said Roxanne. She also explained that Ethan does not know he has a heart disease.
“For now, our goal is to keep Ethan healthy so that there are no delays in surgery or catheters. As a parent it’s hard to believe how much our life has changed and how we never knew a life like this existed.”
This summer, Ethan will have his fourth and hopefully his last open-heart surgery until early childhood when he may need a transplant.
“He will be having the Fontan procedure. The purpose of this surgery is to make blood from the lower part of the body go directly to the lungs. This lets the blood pick up oxygen without having to pass through the heart,” said Roxanne. “Not only are we trying to financially prepare for it, but we also have to make arrangements for our two boys who will be back home for at least 10 days while Ethan is recovering. We will use prayer to prepare us mentally and spiritually.”
Awareness for CHD
Before April of this year, Ethan had Medicaid which helped Roxanne and Fernando tremendously in the past with his surgeries, hospital stays, doctor visits and medication. After reporting their February wages to SSI, Roxanne received a letter stating Ethan will no longer be receiving his benefits.
“We have tried giving them medical letters explaining why Ethan needs his benefits, but they said it doesn’t matter what his medical needs are, he needs to qualify income wise. Fernando works at the San Miguel Mine. It’s crazy how they expect a one-income family of five to be able to afford open heart surgery and all the extras that go along with it.”
The couple reached out to lawyers who, unfortunately, said it was a federal issue and could not help them.
The Nuncios have had to take matters into their own hands and rely on the community’s support to help them. This past Saturday, they held a benefit plate sale where they sold 284 plates and raised $3,870 in sales and donations. The family has also set up a GoFundMe Account for Ethan. All proceeds will help with medical expenses for Ethan’s surgery, recovery and medications this summer.
Charlotte Public Librarian Marianne McGinnis is also holding a raffle to raise funds. You can contact her Monday-Friday, 8 a.m. – 5 p.m. at 830-277- 1212 or see her Facebook page for more details.
However, not only are the Nuncios trying to raise funds, but awareness for CHD which affects many families. Roxanne and Fernando would like to see more government support for families like them in these situations. They firmly believe that families should not have to handle the financial burden by themselves or ever have to make the decision of supporting the rest of their family and paying their mortgage or spending all of their money to pay for surgeries that go beyond their financial capability and control.
“All efforts should be made to give people like Ethan a chance at a normal life,” said Roxanne. “It is saddening to see people like him denied benefits because his parents work and make a little above the allowed income. Until the situation changes, the most we can ask for from people for Ethan is their prayer and support.”