An Update on our Little Roman

It's been a while since I posted on here, and I'm frequently asked about Roman's diagnosis, so I thought I'd give everyone an update on Roman.

First off, he is doing really well. He is exceeding all the doctors' expectations with how well he is doing. He is hitting his milestones like smiling, eye contact, baby talk, rolling over, etc. He hits them late, but he still hits them, and that is what matters.

We found out that the reason for his microcephaly is because some parts of his brain never developed while in the womb. The reason this happened is likely a result of his twin Raven being so sick during gestation. With monochorionic twins, everything is shared, including blood flow. Raven was very sick and had poor blood flow pretty much the entire 23 weeks he lived in my womb. Because of this, Roman's blood flow suffered, and his brain failed to fully develop as a result.

The good news is that the blood tests showed that Roman does not have a genetic condition. The bad news is we will never know what it was that made Raven so sick or what ultimately led to his death.

The doctors are unsure as to how Roman's brain deformity will affect his development. We've been told he may never walk or talk, but we are hopeful that Roman will prove them wrong. He has already surpassed everyone's expectations so far.

Roman also has something called "hypertonia". It is a condition that causes his muscles to be rigid all the time. I couldn't figure out why he would push against me so hard with his arms as I tried to nurse him, while his mouth would be rooting like he wanted food. That answer came with the hypertonia diagnosis. His hypertonia causes his arms and legs to just be straight and rigid most of the time. He can bend his limbs of course, but even when they are bent they are very rigid.

We are often asked what will happen with his head. Will he need surgery to reshape it? Can it be reshaped with just a helmet? We still don't know, but we're hopeful that we will have this answer soon. His head has rounded out slightly on its own though. I was recently comparing photos of his head taken at 6 weeks with what his head looks like now. There's a big difference.

6 weeks old


4 months old

Regardless of what the future holds, we wouldn't have asked for a different baby. He is so sweet and cuddly. He is a great sleeper and has been sleeping through the night since he was six weeks old. My heart melts when he smiles and when he coos. I never knew how much love my heart could hold until I met this boy.