Birth…..and off to the NICU

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I’ve never heard a boring birth story. Have you? There’s nothing boring about bringing a new life into the world. Corey’s birth was no exception.

February 22, 2005. My water broke before 5 AM. I woke my husband up and said, “My water broke.” He yelled, “What?  What?” He’d been forced to wear earplugs for my entire third trimester to deal with my freight-train snoring. He pulled out the earplugs and I repeated myself. He was out of the house like a shot – it was a sitcom. He nearly forgot me.

The good thing about going into labor in the wee hours of the morning was the traffic. There wasn’t any. We arrived at Hopkins in no time flat. The next sixteen hours brought a parade of doctors, nurses, technicians, students, and every other Tom, Dick and Harry on-call that day into my room. Everybody wanted to see the birth of the heart child. I think the janitor even wandered in at one point. This is why I no longer have any shame.

Alas, despite the extensive number of cheerleaders on my team, labor didn’t work. Corey was sunny side up, refusing to budge, and his heart rate was dropping. An emergency Cesarean section followed. Corey broke into the world wailing like a banshee with all his will to live. The anesthesiologist said, “That’s the healthiest looking baby I’ve ever seen.” And he did look perfect. And pink. Would we have discovered his CHD in time had he not been diagnosed in utero? That’s a thought that haunts me.

I was only afforded a brief glimpse of my squalling baby before he was whisked off to the NICU. Then I had to wait until he was settled and the effects of the anesthesia wore off before they would let me visit him. I waited. And waited. I wanted to sleep desperately. My body was ravaged by the labor and then the emergency surgery. But I did not dare. I didn’t know if Corey would live to see his second day, and I could not risk losing him without ever having touched him, without telling him how much I loved him. And so I waited.

In the middle of the night, they finally came to get me. I couldn’t walk, so they wheeled me to the NICU. And then I finally had the chance to introduce myself to my son. To put my hand on his tiny chest and tell him that I was there and that I loved him. And then I slept.

Corey had his first procedure the next day.

A Second Opinion

I used to go to the doctor and just accept whatever he (or she) said. Particularly if the doctor was a specialist. Who was I to question this person with advanced degrees? Who was I to question the tests he proposed, the results, his diagnosis, or even the color of his pants? If you were in a white coat, I was going to accept anything you had to say as the absolute truth.

Thankfully, on October 15, 2004, when the perinatologist handed down Corey’s grim diagnosis, I didn’t choose blind acceptance of the man in the white coat. Instead, we chose to get a second opinion. 

Continuing down Corey’s CHD timeline, the next important date is October 20, 2004. Between October 15th and that date, it was an agonizingly long wait in a fog of fear and sadness. We had all but given up hope that our child would survive. At one point I even hoped the amnio would cause a miscarriage so that I wouldn’t be forced to make the impossible decision between termination and compassionate care. There’s never been a lower point in my life.

Finally, we went to see a pediatric cardiologist (PC) at The University of Maryland in Baltimore on October 20th. I had another fetal echocardiogram. It felt almost pointless. We expected confirmation of the perinatologist’s diagnosis. We were just going through the motions. I remember lying on the table, flat on my back, thinking, “Women as pregnant as I am shouldn’t be flat on their backs.” But my next thought was, “I guess it doesn’t matter.” Still, we needed to be certain we’d done all we could before we made our impossible choice.

That’s why we were shocked and confused when the PC told us a completely different tale than the perinatologist. He said that our son had tricuspid atresia, and while it is a major congenital heart defect, there was every reason to hope. He said it would be a difficult road, but there was another option. A three-stage reconstructive surgical pathway. When we objected and told him what the perinatologist had said, he replied, “Well that guy’s an idiot.”

We were more confused than ever. Did we dare to have hope? We had two completely opposite opinions. From two specialists. How could they differ so much? What were we supposed to do now?

We sought a third opinion. A tie breaker. On October 25, 2004, we went to Johns Hopkins, had yet another fetal echo, and consulted with another group of PCs. The PCs all concurred. We had a chance. Our son had a chance at life. 

We met with the surgeon, and he explained the details of the surgical pathway. When we were nearly finished with the appointment, and our heads were swimming with all the information we’d been given, I asked the surgeon point blank, “If this was your child, would you bring him into the world?” He said, “Yes.” That cinched it for me. We were going to get in the fight and give Corey a chance.

I will never, ever, undervalue the importance of a second opinion again.

The Beginning

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Every parent remembers the moment they found out their first baby was on the way.  It’s one of those moments in life that comes back with spectacular clarity.  Vivid details.  Where you were, who you were with, how you felt, maybe even what you were wearing.  There’s nothing quite like that moment.  Your life changes forever in an instant, and it’s not even a cliche, it’s just a fact.  Whatever happens after that moment – joy or tragedy, and everything in between – that moment is forever.  

This picture represents the moments after I took a pregnancy test in 2004 and discovered that I was pregnant with my first child.  It absolutely tops the list of happiest moments in my life.  I was ready to be a mother by then – more than ready, I was itching for the chance to hold a baby of my own.  To snuggle a sweet little chubby-cheeked bundle of joy, to hear that pitter-patter of little feet, to see the wonder in my child’s eyes when he or she got to try trick-or-treating for the first time, to see that innocent face on Christmas morning beholding all the wonderful presents under the tree.  That moment was a dream come true.  

That was the beginning of Corey’s story.  Now I’m going to walk through each of the points on Corey’s congenital heart defect (CHD) timeline, beginning with the first moment, his CHD diagnosis.  (Please see the link on the home page for the complete timeline, or click here: https://jenniferannefleming.wordpress.com/coreys-chd-timeline/).

The next moment of my pregnancy that stands out in my mind with absolute clarity was the opposite of joyful.  It was devastating.  October 15, 2004.  That was the date that Corey was diagnosed with a major congenital heart defect.  The end of our dreams of a healthy baby.  I remember where I was, who I was with, what I was wearing.  I thought I’d felt pain and fear in my life before that moment.  I was wrong.  There never was pain or fear before that instant.  

Corey’s heart defect was discovered during our routine 20-week ultrasound.  I woke up that morning full of joy.  All I could think about was learning the gender of my baby.  And I did.  I learned that I would have the son I always dreamed of.  But then I learned that something was wrong with his heart.  We would need more tests to determine exactly what the problem was.  My OB was blunt.  My unborn baby might be a candidate for treatment.  Or he might die.

We were referred to the hospital at University of Maryland in Baltimore, and we went immediately, that same day.  We met with a perinatologist.  I had more tests.  I felt terrified, and I had to spend all my energy concentrating on not falling apart.  I needed to get through the tests.  I had to know what would come next.

The news was worse than we expected.  The perinatologist (incorrectly) diagnosed Corey with Double Inlet Left Ventricle.  It is a single ventricle defect, and Corey does have a single ventricle defect, but we would not receive the correct diagnosis of tricuspid atresia for many more days.  The picture painted by the perinatologist was horrifying.  He led us to believe that, should I continue with my pregnancy, my child would be born only to suffer and die.  He offered us termination on the spot.  I considered it.  How could I bring a baby into the world and force him to suffer and then watch him die?  

For a few moments that day, I felt like there was no air.  Either I would kill my child willfully – this child that I had wanted so desperately for as long as I could remember, this child who was named, who had fingers and toes, who was blood of my blood and bone of my bone, this person I loved already like no other – or I would carry him and carry my sorrow, give birth to him, and bring him home with me, where I would count his fingers and toes, fall more in love with him, and then I would watch him die.  Termination or compassionate care.  Is there a more soul-crushing decision a person can make?

The only other option was “get more information.”  When the perinatologist threw that on the table, we grabbed onto it like a life line.  I had next to no hope, but I could not make a life or death decision that day.  I could not do it.  Neither could my husband.

That choice led to immediate amniocentesis in order to do complete genetic testing on Corey.  The doctor told us that, should the tests return any kind of genetic abnormality, the outcome was likely to be death.  And he said it with no compassion.  He saw a burden on society in Corey.  He didn’t see the A student who plays baseball.  I hate him for that.

And then we waited.  In a fog of fear, we waited.  It would be days before we got that information.  Days before we found reason to hope again.  

We waited.