On June 18, 2002, my husband Billy and I had a son; our first child (William Maxwell Graham or “Max”).  We did everything that two excited new parents do when they are expecting a baby (Nursery planning, registry, baby shower – you name it).  We were both so very proud and excited on his pending arrival and we had hoped for this day for so long. My husband spent every night reading to my belly so that our Max would know his voice when he arrived.  But it did not turn out the way we had imagined or planned.  Near the very end of my eighth month of pregnancy (36 weeks, 3 days) my husband rushed me to the hospital.  I woke up from a nap and I was hemorrhaging.  I was not aware just how serious it was.  Maybe I was in shock.  But I thought that my water broke before I looked down and noticed that it was blood instead. 

When we got to the hospital they rushed me into a room and did a sonogram to try and get a fetal heart tone.  They thought they were getting something faint, but they weren’t sure.  Immediately they moved me to a gurney and ran me down the hallway to the operating room.  We passed my husband along the way and I still remember the terrified look on his face.  They prepped me for an emergency Cesarean and the last thing I remember was being stuck numerous times with a needle as they tried to get an IV started.  Reality had still not fully sunk in for me though.  I was expecting to wake up from the surgery and see my baby in my room.

When I came to in recovery I was still unaware what had happened with my son.  I was told that he was in the NICU with my husband Billy and that he was a beautiful baby. Good, I thought!  Everything was all right.  I did not find out until I was more coherent that things were not all right.  When the doctor came to visit me he explained that when I bled out, the baby bled out and was without a supply of oxygen or blood.  He was born without a heartbeat.  They performed CPR on him and gave him several transfusions and it was successful.  However, his prognosis was still up in the air.  They were going to perform some tests and watch him to see if everything was functioning normally.  I still did not realize the severity of the situation. We were both preparing ourselves to be the parents of a mentally retarded baby.

I went to see him in the NICU as often as I could and he was beautiful.  To me he was the most beautiful baby I had ever seen.  He looked so perfectly normal.  He had rosy cheeks, beautiful skin and a head full of hair.  Every once in a while he would make little coo noises.  We talked to him and assured him that we were there.  I wanted so badly to hold him, but we weren’t allowed at that time.  My husband was able to spend more time in NICU with him than I was, getting pictures and letting him grasp his finger with his little hands.

The next day the NICU doctors visited us.  They came one at a time and the news was not good.  One was a neurologist and had come to give us the results of the different neurological tests that were performed.  It was horrible.  We were told that he had severe brain damage.  So severe, that he would never know us, know our love for him and would never be able to breath on his own.  The only thing keeping him alive was the most basic part of the brain that controls the motor functions of the body.  To say we were devastated would be an understatement.  I felt like I was stuck in a horrible nightmare that I could not wake up from.   We were given the choice to continue his life support or take him off and allow him to spend his last moments in our room with us.

Two days after he came into the world, my husband Billy went by himself to pick Max up from the NICU.  He took down with him, the special outfit and blanket we had brought to take Max home in.  The NICU nurses dressed him up lovingly and placed him in my husband arms.  He walked Max back down the hallway to our room on the very opposite end of the hospital.  It was the hardest and longest walk of his life and he did it alone.  Our Max lived for nine hours in our room with us.  It was the most painful and bittersweet time that we had with him.  His breathing was labored and his little body struggled just to take each breath.  I’m sure that it probably hurt us more than it was hurting him.  There are no words to describe how excruciating it was not to be able to help him.  There is no pain like that of a parent unable to heal or mend their baby’s wounds.  It is literally the worst feeling not to be able to protect something so precious and helpless.  We were powerless.

We sat beside each other on the bed and held Max in our arms.  Aside from my mother, we were alone in our room with him.  We just could not stand to have any visitors in with us.  But it was not until we invited the rest of our parents and siblings in that Max finally decided to go. He took his last breath and left us.  I think he chose to leave at the very moment we had finally gathered together as a complete family so he could say goodbye to everyone.

It was not long after that I had asked if I could be discharged.  I could not stand the sound of newborn infants crying in other rooms.  It was just too much.  My doctor came in and cried with me.  He told me that he suspected a possible velamentous cord insertion and Vasa Previa, and that he had sent the placenta and cords to be autopsied.  His suspicions were confirmed later after the results came back.  It was velamentous cord insertion and Vasa Previa.  The vessels were ruptured as a result of contractions and a dilating cervix.

I never knew that either of these conditions existed.  It’s never mentioned in any of the pregnancy books.  What’s even harder to learn is that my little Max could be alive today had I only been diagnosed.  All the warning signs were there.  I hemorrhaged in my 13^th week of pregnancy.  I also had a low-lying placenta (placenta previa) for most of my pregnancy.  Which was just moving away from the cervical os at my 36^th week.

Unfortunately, I was never sent to have a color Doppler ultrasound to rule out VP.  Had this been done, I would currently be the mother of a six month old baby.  This is the worst type of knowledge to have after the fact.  Knowing that something could have been done to prevent it, but it wasn’t.  Had I known about this condition, had I been able to read about it, learn about it, know the warning signs, know what to look for, know what to ask for, I could have taken an active step to prevent it.  My doctor could have taken the appropriate steps to prevent it.  And I could have at least known to request or demand the Color Doppler ultrasound myself, if my doctor wasn’t going to recommend it to me.

It is a travesty that most people never know anything about this condition until it is too late.  It shouldn’t be this way.  This should be talked about and included in all of the pregnancy books so that the parents have more control over their own choices and ability to protect the life of their unborn baby.  Not knowing is deadly.  Finding this condition early and having an elective cesarean early after fetal lung maturity is achieved saves the lives of babies that will otherwise be lost if they are not given that chance.  This condition IS diagnosable and it IS preventable, regardless of what others in the medical community might say.  Failure to diagnose and administer proper management and care is more than likely ensuring the death of an otherwise normal healthy infant.

Parents have the right to know this information so they have a fighting chance.  It’s the worst feeling in the world when you are unable to protect your child from harm.  It’s especially painful to see and hold a beautiful baby in your arms that looks so perfect on the outside and yet so broken on the inside.   There is nothing worse than to lose a child just as he or she is making their entrance into the world.  The final insult is knowing that their loss resulted from ignorance – both the parents and the medical community that parents put so blindly put their faith in.  It is my hope that their will soon be a significant change in the way this condition is so commonly viewed and treated.  That most doctors will take that one simple extra step to diagnose or rule out this condition, AND that they will treat this condition respectively and aggressively when it has been diagnosed.