Rahmell Clinton Jr., now 2 1/2 months old, has known no home other than a hospital.
Since his birth, Baby Melly, as he’s called, has been shuttled from hospital to hospital due to DiGeorge syndrome, a rare congenital chromosomal disorder. He has never met his 5-year-old sister, Naila, or his 1-year-old brother, Noah, nor has he seen much of his parents, Rahmell Clinton Sr. and Ikea Clinton, who are currently living at the Wading River Motel in housing provided by the Suffolk County Department of Social Services.
“When he was born, he wasn’t breathing,” said Mr. Clinton, 28. “He wasn’t crying, anything. I wondered why — and then they rushed him to the side, to the table, and they hooked him up to the machine.”
Despite the odds, Baby Melly has been fighting since birth to maintain a steady heartbeat, keep his vitals regular and keep nutrition down. Multiple doses of fentanyl, open heart surgery and a temporary pacemaker later, he was released from Mount Sinai Hospital in New York, where his procedure was performed. Today, he is in stable condition at Stony Brook University Hospital, where he was born.
Baby Melly came into this world Dec. 16, 2019, a time when his parents were in the midst of financial, familial and residential hardship.
“This is like a journey where we have no idea what’s going to happen next,” said Ms. Clinton, 24. “It’s been a really tough time … it really hurts me.”
The couple said they married Nov. 15 to obtain housing through Social Services. Three days later, they were granted that housing and moved into a one-bedroom unit at the Wading River Motel. The one condition outlined by case workers there was that they could not be away from the motel for two or more days at a time — otherwise they’d risk losing their space.
Both parents were forced to hold it together during that time — for their two older children and for Baby Melly, whose arrival was imminent. Ms. Clinton experienced complications during her pregnancy, requiring her to request maternity leave from her job with CoWorx, a staffing services agency in Pennsylvania. Then, the couple decided to return to New York, and she was forced to resign. In recent weeks, she has found employment as a home health aide for a company in Southampton, but her husband, who did landscaping work, had to resign to tend to their other children and is still searching.
Shortly after Baby Melly’s birth, doctors at Stony Brook detected a weakened immune system and determined it to be a result of DiGeorge syndrome. The condition can cause heart defects, poor immune system function, low calcium levels in the blood and a spectrum of intellectual disabilities, according to pediatric cardiovascular surgeon Dr. Raghav Murthy of Mount Sinai Hospital. The syndrome affects approximately 1 in 4,000 people, although it can go undiagnosed in people with mild signs and symptoms, according to the U.S. National Library of Medicine.
Baby Melly, according to Dr. Murthy, had “a hole in the lower chambers of the heart, called a ventricular septal defect, and he had a hole in the upper chambers of the heart, called an atrial septal defect.”
He also suffered from a right aortic arch, which is commonly seen in DiGeorge syndrome patients, he said.
“His problem was that the hole in his heart was so big, there was a lot of mixing of the red and blue blood,” the surgeon explained. “His heart was working extra hard and he was in heart failure, which was not being controlled with medications and because his heart was using up so much energy, he was not able to grow.”
Of any meals Baby Melly was tolerating, all energy was being used by his heart to pump the mixture of blood, Dr. Murthy said. Since the hole in his heart was so big, the baby needed surgery before the three to six months some children are able to wait. On top of that, like many DiGeorge patients, Baby Melly was born without a thymus gland, making him increasingly susceptible to infection.
“He was about four weeks, weighing about four kilos when I operated on him,” said Dr. Murthy. “All the holes were closed, so right now, he doesn’t have any residual heart defect left. Now, his body can concentrate on using the energy for him to put on weight and continue to grow.”
His parents expressed gratitude to the many doctors and nurses who cared for their son day in and day out — especially when they couldn’t physically be present — and to those who have already donated to a GoFundMe page created by their former Flanders neighbor and Mr. Clinton’s longtime friend, Kerri Ferrante.
Ms. Ferrante created the page on Jan. 9, when she found out Baby Melly was in need of open heart surgery.
“I’ve been living in Flanders in my current residence for 13 years and Mr. Clinton happened to live next door to me in his grandmother’s house,” she said. “I just feel like he’s kind of like my brother, not blood related, but really good people.”
The mother of two said she started the GoFundMe page with a $5,000 goal to help the family travel to visit their son, as they do not have a vehicle or adequate finances, and to help pay for medical bills and treatment.
“This would be life-changing for them, especially under the circumstances they’re in,” Ms. Ferrante said.
The Clintons have said that those who cannot make monetary donations, but would like to help can also provide diapers, clothing and extra resources for their children. To donate, click here.
Dr. Murthy said he has had many DiGeorge syndrome patients go on to lead full lives, but advised that the family will need to continue following up with Baby Melly’s doctors, see about long-term antibiotics as a prophylactic measure and continue monitoring their little fighter’s heart.