Help Bring Junior Home: A Final Resting Place

John Scott Wright Jr.

Junior was born on 6/14/24, a happy and healthy, perfect baby boy. We went home from the hospital Sunday morning, 6/16.

Later Sunday evening we noticed Junior's breathing changed and seemed labored. We brought him to the ER, where they checked his oxygen and said it was perfect. They told Megan she is a first time mom and a worry wart and sent us on our way.

Back at home, Junior's breathing changed again and it sounded like he couldn't catch his breath. We went back to the ER, where we saw two doctors. The first said he would have the pediatrician come and see him. She came down and tested his oxygen again, which was fine. She again told Megan she just worries too much and she's just a first time mom. They were letting us go and Junior was put in his carseat, when the doctor noticed his color change in his face and his lips turn blue. The first doctor asked what to do and the pediatrician said "I don't know". Junior's color quickly went back to normal and his breathing back to what it was... that the pediatrician chalked up to "babies breathing differently". She then said it was probably due to his size and he may need a carseat test, that his actual pediatrician could do at his first appointment, and told us to go.

We got home, Megan fed Junior and put him down. She set an alarm for 3 hours to his next feeding and laid down. She got a couple of phone calls before the alarm went off, she checked Junior and rubbed his cheek, he was warm. When the alarm went off she went to take him out of the bassinet and he was cold.

Immediately Megan called 911 and I started CPR. The ambulance came and took him to the ER where they tried to revive him and worked on him for 45 minutes to an hour.

Megan was asked what she wanted to do and she told them she wouldn't give up on him. At that time they contacted the specialty NICU doctors down in Portland and agreed to have Junior medflighted down for immediate treatment.

Down in Portland, it was discovered that Junior had a very high amount of ammonia in his system. An infants normal number for ammonia should be 60... Junior came in and tested at 2200.

This is when it was determined that Junior had a very rare genetic disorder called Urea Cycle Disorder. It is not detectable in fetal testing, and as the geneticist put it, "it comes down to really shit luck", if it will present at all. In infants it normally presents at 4 days, so even newborn screening wouldn't have been in time.

Sadly, Junior didnt have any brain wave movement. The hope was to lower his ammonia to see if it would return. However, after a day of all his numbers heading in the right direction, Junior started to decline. His ammonia level started to go back up quickly and his blood pressure started to decrease. It was determined that the disorder alone would have been survivable, but coupled with the loss of oxygen for an extended period of time, he would not make it.

Megan held him for hours, while he prepared to go to heaven. He was in her arms as he took his last breath, and for a while longer to just be with him. Mommy and Daddy fought for him so hard after being turned away. Mommy and Daddy stayed with him until he decided he was ready to go. He was surrounded by love and felt no pain.

Now we have to get him home,and need some help. Please, if you can, anything helps.