Share Your Story

On this day 5 years ago, Bruno and I walked into a nearby hospital for an appointment with a perinatologist for a 2nd opinion on Marco.  I was 27 weeks pregnant with him.  We had received a grim report during our previous appointment with the perinatologist we had been seeing, and my regular OB agreed that a 2nd opinion might be a good idea.  We had hope going into that appointment.  Not false/naive hope, but hope.  

After the sonogram, we sat at a big desk as the doctor across from us told us a report even more grim than the one before.  Despite the fact that the amnio was normal, Marco most likely had an unknown genetic condition that would result in him being born with issues so severe that they would cause severe mental retardation.  Tears streamed down my face as Bruno and I held hands and listed to her talk.  In addition to the issues with him, the flow of blood in the umbilical cord was insufficient, therefore making things even worse. 

If we wanted to give him any kind of chance at life, I would need to be admitted that day on bedrest throughout the duration of the pregnancy so that they could closely monitor him. Alternatively, if we "wanted nature to take it's course", as she put it, we could just go home and he would most likely die in utero.

At that point, we had undergone 5 weeks of tests and appointments including but not limited to, an MRI, echocardiogram, multiple sonograms, and amnio.  All yielding more questions than answers.  We were lost and confused.  We usually heard a different version of the same story with each doctor that we saw.  We knew there were issues, but we didn't know what was causing them, and we wouldn't know the severity until he was actually born.

Bruno and I made the decision to have me admitted and give our boy a fighting chance at life. We left the hospital to go home, get my things and collect ourselves and planned to return later that evening for my stay.  We called loved ones and alerted them.

Marco was born 13 days later.  And I left the hospital 2 days after that.  Empty armed and brokenhearted.  

I cried buckets of tears in that hospital.  I prayed.  I watched a LOT of TV.  Friends and family visited, and we laughed and we cried.  They brought me books and magazines, but I couldn't read them.  I didn't have the attention span.  Bruno and I played board games.  We met with doctors.  Lots of them.  I ate a lot of cereal.  I found Share Your Story while there - for which I will be eternally grateful.  I of course had no idea what an impact SYS, and the people that make up this community would have on me in the days, weeks and now years following my loss.

It was a roller coaster.  It was a horribly difficult time.  But I'm so thankful that I got those last 2 weeks with my Marco, and that because of it, we got to see him alive.  Even if it was for just a few short hours.  Those 2 weeks made it possible to hold my son alive.  To bathe him and dress him while he was alive.  Those 2 weeks allowed me to be able to hold my son on my chest, with Bruno next to us, as he died peacefully.

I'll never forget the days between September 23rd and October 6th.  Ever.

Marco, even though I was lost and confused on this day 5 years ago, I know we made the right decision when we decided to have me admitted so that you could have a chance.  I'll never forget hearing your beautiful heartbeat multiple times a day during those two weeks.  I'll never forget the big somersault you did in me while I was sitting in the hospital bed.  I'll never forget the fear we had when you were born, the peace we felt as you died, nor the sadness that followed after.  But most of all, I'll never forget the love that was poured out during that time.  We loved you then, son, and we love you now, our sweet little angel, Marco.