So Dave and I had an answer: IUGR (Intrauterine Growth Restriction). This condition refers to the poor growth of a baby during gestation. Vivian came to us representing the 3rd percentile for weight and height. Along with that symptom (fetal weight below 10th percentile), she had low blood sugar and couldn’t hold her body temperature. My placenta was also smaller than normal (I believe they sent it for testing – I can’t recall). From hearing other IUGR baby’s stories I realized that we were fortunate with a high birth weight and long gestational period, although I probably should have been induced a few weeks prior. Vivian was relatively healthy after she came home. By one year she weighed 15 pounds (3rd percentile) and was 29.75 inches tall (50th percentile). From what I read online, most babies “grow out of it”. OK – that won’t be so bad – she’ll just be a little underweight. Feeding problems often accompany IUGR babies, and we had our share. Vivian never really cried when she was hungry, which forced us to create a consistent feeding schedule to ensure she was getting complete nutrition. Once she started solid foods, she would often hoard them in her mouth like a little chipmunk. She always ate less than typical babies, but kept her weight consistent on her own curve. We had regular doctor visits and they would give us a sheet of paper with our baby’s milestones for age. We started noticing that she wasn’t hitting them. Around 9 months old Vivian started receiving visits from a physical therapist and teacher with the early intervention (Birth to 5) program. When she still wasn’t sitting on her own at 1 year, her doctor recommended we see a doctor of genetics.
The decision regarding which hospital to go to was a little tough. The pediatrician recommended Hershey Medical Center, but we were more comfortable with Johns Hopkins. The proximity was closer and we weren’t sure what other types of doctors she would need to see in the future. Our appointment was scheduled for March 14, 2011.
We met with a genetics counselor first. She took our family’s and Vivian’s history, then reviewed with the Geneticist. He then came in and performed a physical exam of Vivian. Immediately I was amazed at his knowledge. And in tears. Within about 10 minutes he had a suspicion as to what may be wrong with her.