“You look like you could use a good cup of coffee,” Maria would say from time to time to a tired parent at CHOC at Mission Hospital. “Oh yes!” they’d reply as she’d make them a cup.
Maria understands that a warm cup of coffee doesn’t just help sustain a parent who’s running low on sleep, but also gives them back a small sense of normalcy while their child is hospitalized.
Maria, a former department assistant in the administrative offices of CHOC at Mission who recently transferred to the laboratory at CHOC Hospital in Orange, knows this all too well. Her son Nehemiah, who is now a happy and healthy 11-year-old boy, was born with a heart condition and spent the first four months of his life at CHOC.
“If I see a mom struggling, I would try to do my best to be there for them because I understood what they were going through” she says. “They’re comforted knowing that someone understands.”
Delivering next door to CHOC
Thanks to a prenatal ultrasound, Maria and her husband Juan knew there was a problem with their son’s heart. But doctors told them they wouldn’t know the extent of the problem until he was born. Maria chose to deliver her son at St. Joseph Hospital in Orange so that they’d be next door to CHOC, and he would have close access to any specialized care he might need.
Shortly after Nehemiah was born, doctors performed an echocardiogram, a common and safe procedure that helps doctors look at how the heart is working. Dr. Anthony Chang, a pediatric cardiologist who is today CHOC’s chief intelligence and innovation officer, was present at Nehemiah’s birth.
“I was so scared for my son, but I felt like he was in good hands,” recalls Maria. “Dr. Chang explained Nehemiah’s condition and that he needed to be transported to CHOC for emergency surgery. He said it was a race against time.”
Nehemiah was born with interrupted aortic arch and ventricular septal defect, a condition with a large hole in the heart and blockage of the main artery feeding the body. Normally a hole in the heart would be considered bad news, but that hole helped him live because it allowed blood to circulate until corrective surgery could be done.
When Nehemiah was two days old, he underwent his first in what would become a series of heart surgeries, performed by Dr. Richard Gates, CHOC’s medical director of cardiothoracic surgery and co-medical director of CHOC’s Heart Institute.
After Nehemiah recovered from surgery in the cardiovascular intensive care unit (CVICU), he was transferred to CHOC’s neonatal intensive care unit (NICU). He had a feeding tube to help him eat, but as a step towards going home, he needed to work on eating on his own.
Nehemiah spent his first Christmas in the hospital, and his parents weren’t sure when they would be able to bring their baby home.
The day after Christmas, Nehemiah’s condition worsened when he contracted a blood infection called septicemia. Babies under 3 months can contract this because their immune systems haven’t developed enough to fight off overwhelming infections that originate elsewhere in their body. Once he was stabilized, his care team opened his chest so they could administer a vacuum-assisted closure (VAC) to help soak up the infection. A suction pump device connected to a tube with a foam sponge on the end, which was placed into Nehemiah’s chest to soak up the infection. His dressings were changed regularly for several weeks until the infection was gone. Once he recovered, his care team closed his wound and he was transferred back to the CVICU.
It takes a village
It would be another few months before Nehemiah would be able to go home. During that time, CHOC became home for his family. Juan would shuffle back and forth between hospital and the family’s home, bringing Nehemiah’s siblings Ethan and Giovanni, who were 3 years old and 10 years old at the time, to visit their baby brother. Maria’s mom would help the family and visit as well. During Nehemiah’s months-long hospitalization, Maria stayed by his side and never went home.
“It took a village to get my little guy through this ordeal,” Maria said.
A four-month hospital stay
Before Nehemiah was discharged after more than four months in the hospital, his parents received education and training from his doctors and nurses, so they would be able to care for him at home. He was discharged with a feeding tube, oxygen tank and medication.
“We were so excited to finally bring him home. In a sense, it was like we all got to finally go home,” Maria recalls. “My other two kids had essentially been living with their grandma, I had been at the hospital, and my husband had been going back and forth. We were finally together under one roof.”
Nehemiah’s heart was fragile, so as he grew up he would sometimes get sick more easily, and more severely, than his brothers and friends.
“If he would get sick with just a little cold, he would go from zero to 10,” Maria says.
Sometimes that would include seizures, which lead to two hospitalizations.
A second heart surgery
Nehemiah has undergone one additional surgery to repair a blockage that developed between his heart and great aortic artery, called a subaortic membrane.
“After his last heart surgery, his seizures stopped, and he started becoming normal,” Maria said.
These days, Nehemiah, who loves sports and music, visits CHOC every six months for check-ups with Dr. Chang to see how his heart and arteries are progressing as he gets older.
“His team always wants to know as he is growing, are the arteries growing with him? Eventually, he’ll need another procedure someday,” Maria said.
Despite semi-frequent trips to CHOC, Nehemiah is not afraid of doctors because for him, doctor appointments are second nature, according to Maria. Nehemiah has spent so much of his life in and out of CHOC that he refers to it as “My CHOC.”
A few years ago, when Maria was looking for a new job, her personal connection to CHOC was a big factor in her search, she says.
“I felt like CHOC was somewhere I’d want to work because I had so many positive experiences here as a mom. Everybody was very friendly. The nurses were good with all my kids, and with me too,” she said. “I remember that little things went a long way, and I try to bring that to my work here now.”
For more about CHOC’s Heart Institute