15 Minutes – Benjamin’s Story

It was a wonderful pregnancy.  We had waited three years for this miracle, and he was more than worth the wait.

I wanted it all; I wanted the morning sickness, the kicks in the middle of the night, the protruding belly, the tired breasts, and the ultrasounds.

At the 16-week ultrasound, they told us we were having  a boy.  A son!  My heart soared as I imagined all that he could become.  At the 20-week ultrasound, they noticed that his heart was pushed a bit leftward.  Not to worry, we were told.  The heart looks fine.  Keep planning on this baby.  But to be safe, the ultrasounds kept coming…every few weeks.  Finally, at 33 weeks and 3 days, I was sent for a fetal MRI.

That Friday afternoon, the doctor called.  I almost said, “What’s the good news, Dr. S?”  But something stopped me.  I don’t know what it was.  Maybe it was his tone, maybe it was intuition.  And that’s when he said, “We see what appears to be a diaphragmatic hernia.  Let’s schedule a conference for Monday.”

Saturday passed, and surprisingly I didn’t Google.  Sunday was a different story.  I learned what we were up against and my heart broke for what my baby would have to go through.  My little boy.  My first.  He wouldn’t be coming home with us.  But still, I didn’t make plans for if he didn’t make it.  That wasn’t an option.  The kind of determination that only comes with maternal instincts kicked into gear, and my husband and I uprooted from Charlottesville, VA, to Philadelphia, PA, so that he could receive his care at Children’s Hospital of Philadelphia.  Surely, the best of the best would mean he would survive.

We left everything behind except what we would need for the next few months.  We put all of his things in his almost-finished nursery, shut the door, and left.  We expected to bring him home right around Christmas – three months later.

It was there, at CHOP, that the other anomalies surfaced.  His lemon-shaped head.  His short long-bones.  His low-set ears.  His massive, right-sided diaphragmatic hernia.  The doctor offered an amniocentesis, and I said no – it wouldn’t change what they could do for him.  He said it absolutely can and probably would.

Between the time of the amnio and the results, he stopped growing.  At 37 weeks, the doctor said he was in big trouble and we needed to get him out immediately.  An induction was scheduled, and just before they started the Pitocin, another doctor came in with a piece of paper in her hand and worry in her eyes.  She canceled the induction, sat down next to me, and told me that the results were not good for Benjamin.

He had an unbalanced translocation of chromosomes 4 and 7, and the extra genetic material for 7 was massive – which directly correlates to the severity.  It was the cause of everything – his CDH, his abnormal growth pattern, his delayed growth, the shape of his skull, everything.  It also meant that his condition was incompatible with life.  They could fix the hernia, but they can’t fix chromosomes – and his body would fail, one organ after another.

We had a choice.  Put him through treatments and surgeries for days, weeks, maybe months…or let him go naturally, without medical intervention.  We had a choice about how our baby died.  Not if, but when and how.  It was the worst moment of my life, up to that point.

The induction was canceled and we were allowed to leave.  We decided to wait for labor to begin spontaneously and just love him as long as he lived.  There was a chance he’d pass away in utero, but an induction meant an earlier death.

We waited for a week and a half.  The hospital’s social worker put us up in a hotel for the duration.  Every single day began and ended with tears.  We’d often ask each other if we were doing the right thing for him, to let him die like that.  I treasured every kick, rubbed my belly often, and told him I was so sorry.  That I loved him.  That I wanted so much more for him.

On September 15, 2011, in the early morning hours, my water broke.  Labor was uneventful, and would have been perfect if not for the expected outcome.

Around 9:00pm, I began pushing.  At 10:01pm, he was born.

The midwife (the doctor was still getting ready) caught him and handed him to me.

He didn’t make a sound.  He didn’t open his eyes.  He hardly moved.  My husband and I kissed him and spoke to him, counted his fingers and toes and told him how much we loved him.  How beautiful he was.  He truly was the most handsome baby.  At 38 weeks and 2 days, he was 4 pounds, 12 ounces, and 19 inches.

Thinking of when he was alive is a struggle.  I know it’s strange to think of a baby forming very logical thoughts, but it hurts to think about how he might have wondered why nobody was doing anything to help him.  I just think of him saying, “I can’t breathe.  Why isn’t anyone doing anything?  Don’t they know I can’t breathe?”

And then, decades too soon, he was gone.  He lived from 10:01pm to 10:16pm.  Just 15 minutes.

Before his birth, I pictured myself begging him to hang on.  But when the time came, I didn’t.  I didn’t want him to be hurting for a moment longer than he had to.  Letting go appeared to be effortless, and that’s the way it should have been.  Still, I selfishly wanted more time – but anything less than forever wouldn’t have been enough anyway.

(I’ll try to make the rest of this quick.  Didn’t mean to type such a novel.)

A month-and-a-half later, we received the karyotype analysis on my husband’s and my chromosomes.  It turned out that Benjamin’s unbalanced translocation happened as a result of a balanced translocation in me.  It’s sort of an invisible genetic defect; you don’t know it’s there until you have testing…or you deliver a baby with an unbalanced translocation.  we became pregnant again.  I didn’t know it would happen again so soon, and I think I wasn’t as ready as I thought I was.  Not physically, not emotionally.

(NOTE:  The below text refers to a current pregnancy.  Please stop reading here if you are not ready to read about this.  <3)

Around the same time,   we became pregnant again.  I didn’t know it would happen again so soon, and I think I wasn’t as ready as I thought I was.  Not physically, not emotionally.

At 13 weeks, we had a chorionic villus sampling (CVS).  This test will be a part of any future pregnancies for us.  The results came back 7 days later and showed a perfectly healthy baby girl.  At 20 weeks, we had a flawless mid-pregnancy ultrasound.  She’s due in July, and she’s kicking right now, as I type.

She would not be here if Benjamin hadn’t passed away.  He was born a bit early and I ovulated because I, obviously, was not breastfeeding.

These days, I’m really struggling with this.  I will never, ever stop wishing that Benjamin was still here, but I am so thankful for Paisley.  I love her so much already and it took a while for me to love her as her own person.  It’s not easy to pine for a world where both of them exist, but I do.

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