Welcome to Fulton’s CaringBridge website. We’ll continue to update you on Fulton’s status and share photos on the website.
Fulton was born on Christmas Eve, 2017 at 9:30 PM at St. Johns Hospital. Beautiful baby boy for a Christmas gift!
Fulton has been diagnosed with an immune disorder called Severe Combined Immunodeficiency (SCID). This is a very rare condition. He has an extremely compromised immune system. Blood tests have shown that he only has 11% of the normal amount of white blood cells.
Fulton has been placed in isolation in the NICU so he is not exposed to any germs, bacteria, or viruses.
To understand what SCID is go to:
https://www.genome.gov/13014325/learning-about-severe-combined-immunodeficiency-scid/ Read the section: What do we know about the immune system and SCID?
When Katherine was 30 weeks along she felt that Fulton wasn’t kicking as much as what he had been. An ultrasound detected that he was very small for 30 weeks. He was estimated at 3 lbs. 2 oz.
The doctors involved wanted her to have ultrasounds done every Monday and Thursday to monitor Fulton’s growth. Katherine went on bedrest at this point. His growth continued to be behind a normal progression. Specialists at Children’s entered the picture and they started monitoring also.
Fulton was now being labeled as being an Intrauterine Growth Restriction (IUGR) baby.
Intrauterine growth restriction (
https://www.webmd.com/baby/iugr-intrauterine-growth-restriction) (IUGR) refers to a condition in which an unborn baby is smaller than it should be because it is not growing at a normal rate inside the womb.
Delayed growth puts the baby at risk of certain health problems during pregnancy delivery, and after birth.
At 33 weeks the doctors felt they would have to induce long before full term. His original due date was January 12th. Depending on what the kind of growth Fulton was showing either December 15th or the 22nd were the prospective dates to induce. Things had improved a bit so it was wait and see time. An ultrasound was done on December 18st and Fulton’s abdomen was showing the size it should be for 31 weeks and wasn’t keeping up with other parts of his tiny body. The decision was made to induce that next Friday, December 22nd.
The plan was to induce slowly to start with and monitor Fulton closely for any severe stress. If he was showing any signs of stress then resort to a C-Section immediately. The induction process started at 10 AM and continued until Christmas Eve Sunday. Just as the decision was made that it had been too long and perform a C-Section, Fulton decided differently and he was born at 9:39 PM at 3 lbs. 13 oz. a height of 17 ½ inches. He was projected to be 4 lbs. 9 oz.
Fulton was placed in the NICU at St. Johns. Katherine and Jeff’s room was just down the hall. Katherine told me that Jeff was sneaking out all the time to go hold Fulton.
Fulton had issues eating as he was just so small that he’d run out of energy. He was eating from a combination of Mom, a bottle and tube feeding. His strength and energy to eat ebbed and flowed for the first 6-7 days. He became very pale and was having difficulty in breathing and eating.
St John’s staff ran a number of tests and everything was coming up negative.
At St. John’s they would have to pull 6 ml of blood for tests as they would have to send it out to 6 different labs. Fulton didn’t have 6 ml to give. Children’s only needed 1 ml as their lab could test for everything that was needed. Fulton went for an ambulance ride to St. Paul Children’s with Jeff and Katherine immediately behind.
The roller coaster ride was in full swing now. Jeff and Katherine could stay in the room with Fulton. They were able continue to do skin-on-skin holding him. It took almost 2 days to find a good enough artery to get blood from Fulton. He was stuck multiple times.
Results from the PKU test showed that he had failed the immunology testing. He had only 11% off the normal amount of white blood cells. He was retested and failed again.
When the testing began a doctor explained to Jeff and Katherine that they throw a pretty wide net out to find what the issues might be. They said not to get too concerned when you hear some of the things they were testing for. One of those scary things was SCID.
The tests confirmed that Fulton had SCID. He now had to be moved to isolation to protect him from any and all bugs. The doctors, nurses, and Jeff & Katherine have to completely cover themselves and wash their hands repeatedly.
Fulton would still be able to eat breastmilk as Katherine would be exposed to any bugs that were in Fulton’s room and her body would produce the antibodies to fight anything off. Roller coaster was starting a little upturn just to fall right back down. They took blood from Katherine to test for CMV (
https://www.mayoclinic.org/diseases-conditions/cmv/symptoms-causes/syc-20355358). 95% of us have CMV and majority of the time it poses no issues. But in a baby with SCID it can be lethal. Fulton is now getting formula until Katherine’s blood tests come back.
Minneapolis Children’s specializes in immunology so Fulton is being moved there from St. Paul Children’s.
