CLEVELAND, Ohio (Ivanhoe Newswire) — It’s a surprising stat — one in a hundred babies born today will be born with congenital heart disease. More than 2,000 babies in the U.S. are born with the most severe form. For these infants, their first months are spent in the hospital. Now, new technology is allowing parents to take their babies home with the assurance doctors are keeping a close watch on them.
Little De’Angelo junior has smiled through a lot this past year. He was born with a complex form of hypoplastic right heart syndrome.
“Parts of his heart didn’t form. We have chambers that open and close to let blood flow in. His was like born like a wall,” explained Miracle Redrick, De’Angelo’s mom.
After 118 days and one heart surgery, De’Angelo was sent home to wait for his next operation.
“We’re very focused on watching them closely at home, but we’d like for them to get home, that’s the best place for them to be if we can do it safely,” assured Sarah Plummer, MD, a pediatric cardiologist at University Hospitals Rainbow Babies & Children’s Hospital.
New digital home monitoring technology called Hearts at Home is helping doctors keep an eye on De’Angelo from a distance. Oxygen levels, heart rates, and weight can be monitored in real time through an app every single day.
“There’s also a place for them to put photographs, videos, additional information in terms of how the babies are feeding and pooping and peeing, and if they’re throwing up or not,” continued Dr. Plummer.
“We are constantly on the iPad, on the desktop and viewing where these families are at. We’re on the phone and we’re catching things early for these families to make sure that nothing is happening at home,” shared Jodi Zalewski, a nurse practitioner at University Hospitals Rainbow Babies & Children’s Hospital.
Something did happen to De’Angelo … he caught COVID. But even then, this little fighter stayed home.
“It allowed us to watch him from afar and not have to admit him to the hospital,” said Dr. Plummer.
“He’s strong, he’s strong. He fights off a lot,” smiled Miracle.
Now, De’Angelo is feeling better waiting at home with his mom and dad for his next procedure.
Before Hearts at Home, parents would need to refer to a binder full of information on what to watch out for and to record their data. Since implementing the app in 2017, no babies at Rainbow Babies and Children’s Hospital have died while at home waiting for their next procedure. Before the app, that number was as high as 15 percent nationwide.
Contributors to this news report include: Marsha Lewis, Producer; Roque Correa, Editor; and Kirk Manson, Videographer.
SAVING DE’ANGELO: MONITORING LITTLE HEARTS AT HOME
REPORT #2875
BACKGROUND: Hypoplastic Right Heart Syndrome, or HRHS, can be a range of right-sided congenital heart defects in which the right-sided structures are underdeveloped or not formed. These structures include the tricuspid valve, right ventricle and/or pulmonary valve. When these structures are too small or do not function properly, the right side of the heart cannot send enough blood to the lungs, which causes a baby with untreated HRHS to have abnormally low oxygen levels. The treatments for HRHS have developed considerably in the last few decades and are tailored to each baby’s needs. HRHS is less common than hypoplastic left heart syndrome, or HLHS. Within the U.S., HRHS occurs in 1 in 60,000 births, whereas HLHS occurs in 1 in 4,300 births.
(Source: https://www.ssmhealth.com/cardinal-glennon/fetal-care-institute/heart/hypoplastic-right-heart-syndrome and https://en.wikipedia.org/wiki/Hypoplastic_right_heart_syndrome)
CURRENT TREATMENT FOR HRHS: Most babies with HRHS can be delivered at full-term. After delivery, the baby will need prostaglandin (PGE), an intravenous medication that keeps the patent ductus arteriosus (PDA) open. The PDA will allow blood to get to the lungs. A cardiac catheterization may be required to perform a balloon atrial septostomy in the first few days of life. This x-ray is a guided procedure done by placing a thin flexible tube, or catheter, through the umbilical vein and does not require an incision. A balloon atrial septostomy creates a larger hole between the top chambers of the heart. The interventions for HRHS vary depending on which structures are abnormal. In more severe cases, the right heart is too small to send enough blood to the lungs. Shortly after the baby’s birth, surgeons perform the first of a series of surgeries done to increase blood flow to the lungs and bypass the poorly functioning right side of the heart. These surgeries are not able to cure HRHS but do provide for a functioning heart.
FURTHER RESEARCH: The Fontan procedure has allowed more people born with only one ventricle, the lower pumping chamber of the heart, to survive into adulthood. A new scientific statement published in the American Heart Association journal, Circulation, summarizes how best to care for these unique patients. People with Fontan circulation have chronically elevated pressure in their veins and less blood being pumped out of their heart, which can lead to circulatory failure because when the heart pumps less efficiently it is not able to provide enough oxygen to the cells in the body. “We need more research into the basic biology of single ventricle hearts and whether the damage to other organ systems, such as kidneys, liver and brain can be mitigated or reversed,” said Jack Rychik, MD, Robert and Dolores Harrington endowed chair in cardiology and Professor of Pediatrics, Children’s Hospital of Philadelphia. Although life expectancy for people born with one ventricle is lower than average, people with Fontan circulation can live a fulfilling life.
(Source: https://www.sciencedaily.com/releases/2019/07/190701144633.htm)
* For More Information, Contact:
Katelyn McCarthy, Public Relations
katelyn.mccarthy@uhhospitals.org
(216) 870-6321
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