Family says the 1-year-old baby, who suffers from a rare genetic condition, has finally been discharged from the neonatal intensive care. The little boy reportedly spent the last 11 months of his life in a hospital. The baby’s parents said that their son spent 11 months in the hospital where he had four operations to ease the condition, including one which left him almost unconscious for a week. Doctors told the parents that the condition prevents the baby from absorbing nutrients. There are only 50 reported cases globally, with the boy being the only one with his specific genetic mutation.
The parents from Illinois, Kim Nguyen and Dan Do, told Good Morning America that their 1-year-old son, Max Do, suffers from a rare genetic condition causing his intestines to swell and fill with fluid. Max was reportedly born by emergency caesarean at 31 weeks after doctors noticed his abdomen was becoming bloated in the womb. The baby was taken taken to the intensive care unit at the Children’s Hospital where doctors diagnosed him with congenital sodium diarrhea, when the body struggles to remove salt from the intestines leading to a watery build up.
The baby’s parents told GMA that their son spent 11 months in the hospital where he had four operations to ease the condition, including one which left him almost unconscious for a week. Luckily, the boy was allowed to go home and meet his 6-year-old sister Ivy. According to the health officials, congenital sodium diarrhea is a very rare condition, which can be triggered by a range of genetic mutations. It’s such a rare disorder there are not reliable statistics available about how many people have it.
Max’s parents also told Good Morning America that doctors first realized their son would need extra medical attention during a routine scan.
Dan Do reportedly said: ‘When Kim was pregnant, we saw in the ultrasound that Max’s stomach was already getting distended, and they saw that amniotic fluid was not going in and out of Max the way it should be and, as a result, Kim’s stomach was getting bloated up, really rapidly.”
According to Daily Mail, Dr. Michael Chapello, who is a neonatologist at the hospital who was helping with the baby’s care, reportedly said: “That usually means that there’s a bowel obstruction of some sort. He did have surgery to look at that… but as it continued to be distended — that was because there was so much fluid going in there — we realized that we needed to evaluate exactly why.”
Doctors told the parents that blood tests revealed that the baby was suffering from a genetic condition that was triggering the illness. According to the health officials, babies born with the condition immediately have watery diarrhea, even in the absence of being fed. Max will still need to get nutrients through an IV, and his parents will get frequent help from nurses who will come to their home.
Max’s family has launched a fundraising page, which stated:
“Baby Max was born with a rare genetic disorder called Congenital Sodium Diarrhea, a condition that prevents him from absorbing nutrients. There are only 50 reported cases globally, with Max being the only one with his specific genetic mutation. Max spent most of his first year of life in the NICU where he earned the nickname of “Mayor of the NICU” by doctors and nurses as he experienced all of his first milestones there.
His parents, Dan Do and Kim Nguyen has been by his side everyday as he continuosly fought and beat the odds against him. Max was able to leave the hospital after 11 months to go home to meet his big sister! Max will still need to get nutrients through IVs daily and will need an at-home nurse to care for him. Any contributions will go towards Max’s medicine, medical care, medical supplies, and equipment.”