“Are you sure about the dates” that was the first indication we had that something could be wrong with our second child. Our long awaited, prayed, begged and pleaded for, second child. My husband and I have two sons born 11 years apart and both at 38 weeks gestation. Both my sons were born small for gestational age with intrauterine growth restriction. The younger was deemed severe and had to be monitored very closely due to absent diastolic flow. My older son had no other issues and by 9 months of age, he was leveling out into the 70-80th percentiles for height and weight. My younger son had many complications with his pregnancy and birth. I just kept thinking “once we get him through this part, he’ll be okay, he’ll take off growing and going.” But he never took off, he stayed below the first percentile.

The maternal fetal medicine specialist that advised the plan for our pregnancy had mentioned that IUGR/SGA babies sometimes need additional testing, especially if they don’t show evidence of catching up. Everything has been harder for our younger son, even eating. Milestones have come later for him, too. He seems like he understands, but he just can’t. He looks like a younger baby. Now at 16 months he’s actually the size of his older brother at 6 months. The pediatrician saw him frequently and every visit I would raise the issue of his size and slow progress. I would mention the MFM recommendation. Every visit I was reassured with “his growth velocity is the same” and “you’re small, he may just take after mom.” Family and friends would tell us that “he’s so tiny!” and ask his age, even though they knew already.

Eventually, when my younger son was about 10 months old, both of our children were at the pediatrician for a routine visit. Everything clicked for the pediatrician then… “they’re brothers? I never really put them together.” Then the concerned look of “something isn’t right.” After a lengthy discussion about my niece with GH deficiency and looking at my son’s growth charts side by side, we were referred to a pediatric endocrinologist. Our first visit with the endocrinologist, I came prepared with homemade growth charts from both my sons, milestone dates, all the firsts were dated and side by side to compare. The doctor said that our baby is small for his age, but he had a consistent growth velocity. Just to be thorough, they sent out some basic labs and IGF-1 level. It seemed like the endocrinologist thought I might be overreacting about my child’s small size. I was told “no two children are the same, not even siblings.”

There was a different sense when the call came that his IGF-1 level was low and that my little one would need a growth hormone stimulation test. Then sympathy when he called to tell me that my now 12 month old had failed the stim test a few days prior and needed an MRI under anesthesia. The MRI showed pituitary hypoplasia. When I expressed concern about a 1 year old baby taking growth hormone injections, the endocrinologist said that if my son had been born at a larger center or if he had known about my son, he would’ve been tested and treated soon after birth. The pieces began to fall into place. We don’t know how many of these issues are connected yet or to what extent, but we do know that about 6 weeks ago, at 14 months of age, our little one started Norditropin injections daily. We had a little mini-party when he finally hit the growth chart for height at his recheck. He’s starting to babble, he’s trying to talk. He’s gotten more hair and finally has teeth. His mind just blossomed.

At 16 months, he finally took his first steps. The endocrinologist says he’s probably always been this way, and now we’re giving his body and brain what he needs to grow and learn. If we hadn’t been persistent, we’d still be wondering why our baby isn’t growing or doing the things his brother did at this age. Now we await his multiple therapy sessions to hopefully help him catch up, and multiple doctors’ appointments to see what else we need to be doing for him. Throughout it all, we have this bright, vibrant, sweet, little super star. He doesn’t even know that anything was missing or that he’s different. He’s always so positive, and that’s what he’s teaching us to be, despite anything that comes our way.