Ronan's Story & 1st Birthday!!

This is written by Crystal Maynor, Ronan's momma:

"I had a relatively easy pregnancy. I failed my glucose test horribly. My result was 220 if I remember correctly. There was no chance to take the three hour test. I was diagnosed with gestational diabetes and upset to say the least. My father has type 2 diabetes and I was not excited about testing multiple times a day, four to be exact, or keeping a log, but I did it for my baby. For the most part my numbers were great. There were a few days when I indulged knowing that I shouldn't, but my obstetrician was happy with my overall numbers. It didn't hurt that I was measuring two weeks smaller either.

At the end of my 34 week appointment my obstetrician told me he'd see me next week for an ultrasound. A red flag went up because I shouldn't be seen again until 36 weeks to begin weekly appointments until delivery. So I started asking and answering my own questions. Why am I coming in at 35 weeks for an ultrasound? You wanna see how big my baby is don't you? He answered yes. You wanna deliver me early don't you. He answered possibly. The following week during the ultrasound the sonographer (technician) told us that our baby boy had dilated kidneys which was confirmed with the obstetrician and that he only weighed 4 pounds 6 ounces. She could not tell us exactly why his kidneys were dilated or why he was so small. She told us she was going to make a referral to a specialist and three days later we were in his office. This specialist confirmed our son had dilated kidneys and gave us the couple of reasons for it. He also confirmed our son's weight at an estimated 4 pounds 8 ounces. The specialist was concerned because at 35 weeks he should weigh two pounds more. He said our son had intrauterine growth restrictions (IUGR). As a result we had a checkup every three days just to hear our son's heartbeat because sometimes fetuses with IUGR die. His recommendation to our obstetrician was to deliver at 37 weeks. We were devastated. We continued with the checkups also involving non-stress tests until 37 weeks and 4 days. The very next day I was induced.

Our son, Ronan, was born at 38 weeks and 1 day on June 25, 2017 weighing 3 pounds 13 ounces. Nurses from the NICU were already waiting in the room for him. My husband did not get to cut the cord or hold him. I held him briefly. He was taken to the NICU and put on CPAP due to his labored breathing. We saw him a couple hours later and he was perfect to us. Newborn screening involved microarray and karyotype testing which came back normal. At some point during the 16 days he stayed in the NICU one pediatrician told us that even though the testing was normal that something had to be wrong. He pointed out facial features Ronan had that seemed normal to us because he was so still so small. We were encouraged to seek further genetic testing. Ronan was discharged weighing 4 pounds 4 ounces.

We were so happy to finally have him home. Then the doctors appointments started. In October at UNC Chapel Hill blood was drawn from Ronan for genetic testing. In December the geneticist we worked with called me and told me what she thought might be wrong. In January of 2018 she called again and diagnosed Ronan with De Barsy syndrome. We were relieved to be able to put a name to it. New worries were brought to light. We met with the geneticist and went over the little research available, symptoms of serious concern and the 1 in 4 chance that we have of having a child with De Barsy syndrome in each pregnancy. Ronan does not have every symptom associated with the sydrome, he is extremely developmentally delayed.

Ronan will be one in a week and a nurse told us two weeks ago that he is at the developmental stage of a six month old. He currently weighs 13 pounds 4 ounces and just began eating pureed foods. Other milestones include rolling over and sitting unsupported. While there are numerous unknowns about exactly how De Barsy syndrome will affect his life there are lots of things that we do know. Ronan is extremely happy. He is as smart and as manipulative as any baby. He knows how to love and boy do we love him."