Things Fall Apart

The birth of a baby is supposed to bring tears of joy and happiness. On Feb 4, 2011 I learned that the birth of a baby can also bring on other tears. I cried almost non-stop for a week after my sweet boy was born.

My pregnancy with Dominic was harder than my first pregnancy, but I have heard this is not unusual. I had more sickness and more achiness, but other than that it was fairly uneventful. All of our ultrasounds came back completely normal as did all my bloodwork. We expected a perfect, healthy little baby boy, just like our perfect little girl we had 2 years earlier.

After an 11.5 hour labor and very short delivery Dominic Joshua Cook was born. A beautiful 8lb 4oz baby boy, Dominic was born with several marks all over his face. It looked like half of his face had bad bruising and he also had a dark mark under his nose.

At first we were told it was bruising but it soon became clear the mark under his nose was some sort of birthmark. Typically, I consulted Google which told me it was a "stork bite", a mark commonly found under the nose which fades in time. While upset that his newborn pictures wouldn't look as perfect as I had imagined, I was relieved that Google diagnosed him with something that would fade in time. Little did I know that Google isn't always right.

The day after Dominic's birth the pediatrician at the hospital diagnosed him with Port Wine Staining. Not only was the mark under his nose not going to fade, but the "bruising" across half of his face was not going to fade either. The pediatrician referred us to a plastic surgeon. This news was devastating but, nothing could prepare me for what followed. The pediatrician said that the staining of the birthmark could indicate "staining" on his brain, a condition called Sturge-Weber syndrome, a disorder characterized by seizures, glaucoma and developmental delays. Dominic would need to undergo an MRI to rule out this syndrome.

A week after his birth we were at the plastic surgeons office. He said he did not want to begin laser treatments until Dominic was cleared of Sturge-Weber syndrome as he would have to be sedated for each treatment. He referred us to a pediatric neurologist and pediatric opthalmologist. A week later we had appointments with both these specialists.

Dominic's eyes checked out well, he did not have increased pressure in either of his eyes. He'll return every 3 months to get them checked. The trip to the neurologist wasn't quite as straightforward. At first he wanted to do an MRI right away, but after doing a lot of research I discovered that any MRI done before the age of 1 would be inconclusive. Dr Comi at the Sturge-Weber Center up in Baltimore suggests doing an EEG in infants under the age of 1 and an MRI at age one. If the MRI at age 1 comes back normal the child is cleared of having the syndrome.

Dominic had an EEG on March 11, 2011. They connected 26 electrodes to his head and shone a strobe light into his eyes. 

The EEG results were normal. I wish this meant something but unfortunately all it means is that at this very moment his brain activity is normal. It is not a conclusive test and does not give us any indication that it will remain normal. All we can do while we wait for the conclusive MRI is monitor him for "strange" or seizure activity and carry on with life as normal. Easier said than done.

I find that the more time that passes, the easier it is becoming to lead a normal life. However, every doctors appointment we attend brings back intense stress and worry. Sometimes I think it would be easier to bury my head in the sand and pretend nothing is going on. The thought of something being wrong with my beautiful boy is something I am not willing to accept. He has to be OK. No matter what happens I know we, as a family, will be fine and Dominic will always be deeply loved and cared for. But he, like any child, deserves to be healthy. He has already seen more doctors than any 7 week old should ever have to see.

Dominic started smiling at 6 weeks old. His smile lights up my day. He is a wonderful little man and a real mommy's boy. To my great surprise he also started rolling over at 6 weeks. The reason this was such a surprise is because Natalie, his sister, did not roll over until she was NINE MONTHS OLD!!!! So far Dominic is meeting all his milestones and doing really well, but we still have a long road ahead of us. All we can do for now is have hope and faith that he will be fine.