Parent Stories

Emmitt - Ohio

Hi, I'm Emmitt and I am 2.5 years old! I was born at 37 weeks gestation and very tiny, only weighing 4lbs 2oz. My mommy had a very normal pregnancy and never felt sick. The only abnormal finding while she was carrying me was upper normal ventricle size in my brain. They took me early because I stopped growing. Mommy and Daddy fell in love with me and my beautiful blue eyes. When I was 4 months old, my family noticed that I wasn't reaching for toys or tracking objects or people with my eyes and they were concerned. After multiple tests (vision screening, MRI, CT, lumbar puncture, blood work, ultrasound, urine analysis) it was concluded that I was born with congenital Cytomegalovirus. 

Lillian - Texas

On December 28, 2011, we welcomed our second daughter, Lillian Grace, into the world. She was a beautiful blond haired, blue-eyed baby, and everything was perfect as we took her home on New Year’s Eve. 

Jayden - Colorado

I went into preterm labor and was sent to a high risk OB who found on an ultrasound severe brain damage to our baby. Jayden was born almost 2 months early, January 17th in 2008, after over 36 hours of labor. He weighed 3 lb 11 oz and was 15 and 1/4in tall. He was immediately taken to the NICU and was put through multiple tests. My husband and I found out that night that our son had cCMV (congenital CytoMegaloVirus). 

Annabelle Grace - North Carolina

​On December 22nd, 2015 I was 35 weeks pregnant and realized that I hadn’t felt my baby move in a few hours. She’d already been measuring small, and they were doing weekly non-stress tests to make sure the baby was ok. The doctors hadn’t seemed too concerned with her small size, just that it may be the difference between me carrying boys and girls.  I made it into my doctors office a little over an hour later and they did a non-stress test and an ultrasound to check on her.  She seemed to be doing ok, just a bit sluggish and the ultrasound showed that there wasn’t very good flow through the umbilical cord.  They decided to admit me to the hospital for overnight monitoring.

Noah - New York

On 10/11/2004, in the front seat of our car in route to the hospital, my son Noah was delivered by his dad. On site he looked like any other healthy 8 lb. newborn. His pediatrician, after consultation with an infectious disease doctor, decided to test Noah for Congenital CMV immediately after his birth. This decision was made because on Noah's routine 20 week sonogram an "echogenic bowel" (bright spots on his bowel) was seen. The doctor I was seeing that day decided to run a TORCH screen blood test. This TORCH screen showed that I had been exposed to a primary infection of the Cytomegalovirus.

Gabriela - California

My daughter Gabriela is probably the most amazing thing that has happened in my life, and without her I would definitely not be the person I am today. I found out I was pregnant in December, 2004. We had been trying for about 4 months to get pregnant, so when we got the positive result, we were thrilled! Things seemed fairly normal in the beginning. I had morning sickness, etc. just like any other pregnancy. But come mid January, I was SICK! 

Silas - Texas

We were so excited when we found out that we were pregnant with our third child. At my regular OB check-up at 18 weeks pregnant, I decided to go ahead and do the 2nd trimester blood screening test. They took one vial of blood and said that they would call me with the results and I didn't think much more about it. The next week (week 19) they called to let me know that my screens came back at an "increased risk" for Down Syndrome and referred me to a genetic screening specialist. The specialist did a Level II Sonogram and immediately found several abnormalities: fluid in the abdomen, enlarged heart, bright intestines, abnormally small baby. 

Sarah - South Carolina

Hi. My name is Sarah and I was born with cmv just 22 years ago. I was born on Feb 26 1989 and like I said I was born with cmv. I had to stay in the hospital for 30 days in the nicu until I could fight the cmv and get stronger. The doctors said I won't make it to the age past 1 but I proved them wrong. Like all cmv fighters they have a medical additions to the virus. Mine has mulitiples. I have walking problems. I had to use a walker when I was a baby. Got off of it when I was only 3 I believe and now I got my left foot goes straight and my right one goes side ways.

Brianna - Florida

It was no surprise that we learned we were expecting on Thanksgiving Day. It was our son, Tyler’s 2nd birthday and a day to reflect on all the things we were thankful for, and that we were. Thankful to be expecting again. This was our third pregnancy. We lost our first baby at 12 weeks and shortly after we had our son Tyler who I carried full term and was a healthy baby boy. So needless to say the first twelve weeks of our third pregnancy, anxiety was high. We made it past the 12 week mark and felt we could breathe again, the ultrasound showed there was a healthy strong heart beat. We were relieved and grateful. It wasn’t until we had our 19 week ultrasound to confirm the sex of the baby that our pregnancy began to take a turn. 

Liam - Virginia

We were super excited to find out in 2006 that we were expecting our second child. To say that the pregnancy was a roller coaster ride is putting it mildly. When I was 11 weeks pregnant, I was carrying our older son Jamie down the stairs when I fell and broke my ankle. I had to get an x-ray and that worried me so much at that time. I was in a boot for 9 weeks. I finally got that worked out and it was time for our 20 week ultrasound. We were really hoping for a girl. When she said it's a boy I was a little bit disappointed. Boy did that seem selfish of me!