Baby Joseph Maraachli Heading to Pediatric Hospital Soon

Bioethics   Steven Ertelt   Mar 30, 2011   |   11:44AM    Washington, DC

Now that Baby Joseph Maraachli has had the tracheotomy his parents wanted him to have so he could breathe easier as he dies from a rare medical condition that will soon take his life, he will soon be transferred to a new hospital.

Doctors at SSM Cardinal Glennon Children’s Medical Center in St. Louis performed the tracheotomy on March 21 and, in a follow-up statement, deemed the procedure “medically appropriate” after a thorough examination of the 14-month-old boy who a Canadian hospital refused to help.

“It is our hope that this procedure will allow Joseph and his family the gift of a few more months together and that Joseph may be more comfortable with a permanent tracheotomy,” the hospital said. “We ask that you keep Baby Joseph and his family in your prayers.”

The hospital also indicated Joseph suffers from Leigh Syndrome, a rare genetic neurometabolic disorder. Leigh’s disease, also known as Subacute Necrotizing Encephalomyelopathy (SNEM), is a rare neurometabolic disorder that affects the central nervous system and it is named for Denis Archibald Leigh, a British psychiatrist who first described the condition in 1951.

The condition typically affects infants between the age of three months and two years and mutations in the mitochondrial DNA or the nuclear DNA cause degradation of motor skills and eventually death. Crucial cells in the brain stem have mutated mtDNA and this causes a chronic lack of energy in the cells which adversely affects the  central nervous system and inhibits motor functions. There is currently no cure for the disease and infants like Joseph rarely live longer than two or three years after the onset of the disease.

The Maraachli family now hopes to take Joseph home to die in peace and privacy.

But first, according to a National Catholic Register report, Joseph is expected to be moved soon to Ranken Jordan, a St. Louis pediatric specialty hospital, before heading home with his parents.

Shortly after the procedure, Joseph was baptized and his parents said they were pleased with the developments.

Moe Maraachli, Joseph’s father, commented:  “It’s a miracle.  My son now has freedom.  I’m very happy.  My wife and I will respect the second opinion from the hospital in St. Louis.  We will accept it with all my heart because Joseph got his human right to get a chance to get a second opinion.  When God wants to take his life He’ll take it and nobody can say ‘No’ to God.”

Father Frank Pavone, the director of Priests for Life, talked about that and gave an update in an email to LifeNews.com, saying Joseph’s parents are pleased following the procedure.

Pavone said, “His parents are so happy that he received a fresh evaluation and second opinion, and they now feel that their baby has been given the proper kind of medical care.”

“Also, Baby Joseph was baptized just the other day, and Jerry Horn of our Priests for Life team is now his godfather,” he added.

“No matter how long Baby Joseph lives,” Pavone added, he thanked the “tens of thousands of pro-life activists who took a stand” allowing him to “receive the dignity and treatment he deserves as a human person. So even though we have no idea how much time we have won for Baby Joseph and his family, we have delivered a clear and powerful message to the world. That message is While there is such a thing as a worthless treatment, there’s no such thing as a worthless life.”

Pavone said the medical costs for the family are building up and could reach as much as between $100,000-$150,000 as a grand total.