darla’s story

Jon and I had always wanted to have a family.  Our excitement as we sat in the waiting room one Friday afternoon in September, waiting for my 20 week ultrasound, was palpable.  We had made it past the 14 week mark, and it that, I guess we felt safe.  We were hoping to find out the gender that day, and we couldn’t wait to see our baby.


We were ushered back, down the hall and into the dark and cozy ultrasound room.  The hum of the machines immediately relaxed me.  I lay back, and the technician squirted the warm gel onto my growing bump.

The ultrasound began, and Jon and I stared up at the screen in completely awe.  Before our eyes, we saw feet and legs and arms and eyes: tiny parts of a tiny baby that we had made.  The technician kept commenting on how wiggly the baby was, but I already suspected that from all the swirls and popping bubbles I had been feeling for a few weeks.  Still, I felt a sense of maternal pride as my perception of movements was confirmed.  I felt like a wiggly baby meant a healthy baby.  Our baby was wiggling. 

The technician took pictures for about 15 minutes.  She measured the thigh bone, showed us the brain, the heart beating, the tiny hands balled up into fists…like a tiny little boxer, getting in jabs.  Never once did I suspect anything was wrong.  Everything just seemed to flow, and the baby danced up on the screen.   

After not too long, she left.  She hadn’t been able to see the gender, and so we hoped that the doctor would be able to tell us.  But when he entered a few minutes later, he barely introduced himself.   

The doctor was silent as he methodically controlled the ultrasound wand as if he was searching for something.  Unlike the technician, he was pressing hard on my stomach.  He repeatedly zoomed-in and out on the brain from different angles.  Just the brain.

Something felt wrong.  Finally, the silence was broken. “I have some bad news,” he said.  “Your baby is not developing normally.”  I swear, I heard my heart crack.

He listed off his concerns: our baby’s hands weren’t open; our baby had a smaller than normal cerebellum; our baby had a hernia causing the bowels to develop up near the lungs; because of the hernia, our baby’s lungs wouldn’t grow; our baby’s kidneys were too small; our baby had an inverted chin…the list kept going.  It was a literal laundry list of reasons to fear every next step.  I’d soon have this list memorized.

He stopped, it was silent, and then he just looked at me.  I heard the words: “Well, we can’t end it.  So now what?” float out.  I realized that I had said it.  He told me to “get cleaned up,” and asked us to meet him in his office.  When he left, I remember wailing.

When found his office, somehow.  After reviewing his concerns, the doctor then asked if we would consider “interrupting” the pregnancy.  I knew what he meant, and I told him that was not an option.  He nodded his head and said that the next step was for me to get an amniocentesis.  He scheduled one for me on Monday at 9:30 am with his partner. 

Before we left, we asked him to try and find the gender.  He said he would be happy to take another look.  Happy.  We went back into the same room, but it felt so different than the first time we entered.  He started the machine and looked for a while.  As I thought, he said: “It’s a girl.” 

I’d always wanted a baby girl.  

We chose her name that night: Darla Jane.  We called our families that night to update them.  They live out of state, and they were waiting expectantly.  Both sides of the family answer on the first ring, breathless.  And like the doctor has done with us, he struggled to find the right words to use to break their hearts.  These were the most difficult calls we’ve ever had to make.

That weekend, the doctor from our scans that Friday called to check on us.  He was worried about us.  So was I.

The weekend passed slowly.  We returned Monday for our next set of scans and for the amniocentesis.  The technician began the ultrasound, a different technician than we had that past Friday.  The light was dimmed, and Darla was back up on the screen.  The first the I noticed were her hands.  They weren’t balled up in tight little fists by her face. They were open, waving hello.

My girl.

My heart rose.  The internal rise from despair to hope I felt at that moment was a perfect preview of the months to come would be like.  Rise and fall; ups and down.  Consuming love, complete with the shadow of fear of losing it. 

The ultrasound continued as the new doctor came in.  After looking at Darla more, he asked us to come into his office.  He hadn’t spoken to us yet, and he wanted to speak with us before the amniocentesis.

We sat down as the new doctor immediately expressed his condolences.  He let us know that he could not confirm many of the things that were seen on Friday.  Obviously, she would be able to open her hands. However, he still had major concerns about our baby.  He suspected Trisomy 13 or 18, but he wasn’t sure.  

His main concerns included:

1. A diaphragmatic hernia (called CDH)

2. Her lung formation

3. Her kidneys being too small  

4. Her cerebellum is small (the part of the brain that controls motor skills and balance)

5. Her chin appeared to be inverted

 He told us that our baby didn’t have much of a chance at life after birth.  He warned of a life full of surgeries and equipment and specialists…if she made it past birth.  He advised us not to “get on that train.”

He knew we wanted to have more children, and he encouraged us to think of them. He said something like, “When it comes time for your future children to go to Girl Scouts and ballet lessons…not with this child.  Their lives will be consumed by their older sister.”  Exhausted, I repeated: “We can’t end it.”  I wanted him to stop talking.

He asked us what religion we were, wondering if this was why we were set on keeping the pregnancy.   He told us his views, and said, “No matter what you do, God will love her anyway.”  The pressure continued.  I felt the enemy in the room so strong, and I eventually stopped talking.  I just wanted to be alone.  We finally left his office, and the amnio was over before I knew it. 

A few weeks later, we received a document in the mail.  The first doctor had sent us a copy of his report from our first session.  He reviewed all of his concerns, and the last line read that the “couple appears to have a moderate understanding of the challenges.” 

Let it be known: we understood completely.  There was nothing moderate about what we understood.  We were the ones living with the list of suspected challenges and lack of answers echoing in our thoughts every waking moment.  I was the one feeling a baby kick inside of me that I wasn’t sure would live.  We understood, we just didn’t care.  I felt so mad when I saw that.  I didn’t know how it would all end, but I knew that God wanted us to do it this way. 

We were both starting to accept that this whole thing was so much bigger than us.

Soon, I began to show.  I went from nothing to a huge bump, literally overnight.  It was hard to walk around and have people smile at me, ask me about the pregnancy.  Everyone wanted to know if I had morning sickness, if it was a boy or girl, if I’d chose colors for the nursery.  I was pregnant, and the world was happy about it.

After feeling like my current team had written her off, I did some research and I made an appointment with Boston Children’s Hospital.  They have an excellent CDH program.  With this, my care was transferred to the high-risk OBGYN at Brigham and Women’s.  Surrounded by the best, we just had to wait.  Those weeks were excruciating.  Every kick, every squirm, every little baby hiccup…and not knowing if we’d get to meet.

I ended up going into preterm labor at 27 weeks.  I spent 5 days in the hospital, which led to 2 weeks on bed rest.  At the hospital, I spent those 5 days hooked up to monitors.  I fell asleep to her heartbeat.  I heard her hiccups; I learned to drink juice to make her move. 

In this hospital stay, I couldn’t hide behind work, life, distractions: it was just me and her.  And as much as I thought I was in love with her, I finally realized how hard I had been trying to hide from feeling too much.  I had been trying to protect myself, but I just couldn’t anymore.

I left that hospital stay completely in love with her.  I was so vulnerable.  I was ridiculously in love with my little daughter. I didn’t care anymore, I didn’t care if I got hurt. 

I was sleeping on the couch on November 30th when my water broke. 

I was barely 30 weeks, 2 weeks too early for the doctors to perform the interventions necessary to try and save her.  I stood in the bathtub with all of the extra fluid her little kidneys had made gushing out.  I was screaming, crying, willing everything to stop.  I pleaded with God; I told Him it was too early.  I begged Him not to let it happen; we’d come so far.  I wasn’t afraid anymore.

After rushing to the hospital and being admitted, I was in a lot of pain.  After checking me and seeing I was 7 cm dilated, I was rushed into surgery.  Darla was still breech at that point.  They wanted to do a C-section; they were worried about me giving birth to a breech baby.

Because it would have been a risky “classical” C-section, they decided to let me push.  I felt completely unprepared, but I just listened to everyone around me.  I did whatever anyone told me, and I remained in a constant state of prayer.   I was going to birth my baby. 

About 30 minutes later, our beautiful daughter was born. I knew our Darla would not cry when she was born, her lungs were too small.  I still listened for it, hopeful…but she did not cry.  She couldn’t.

The team from Children’s hospital was there.  I delivered at Brigham and Women’s, and the two hospitals are connected by a bridge.  This was the team we had been planning for.  They immediately started working on Darla.  A few minutes later, the neurologist came up to me.  “Kristine,” she said, “you know that there were concerns about her brain.  Well, she’s not moving like she should be.  They’ve been trying for a while now, and they can’t get her heart to start.” 

I couldn’t bear it.  We had come so far, we were so close.  I closed my eyes, and prayed one word: “Please.”  Jon began to walk over to her, and suddenly, a machine started beeping and her heart started beating. 

I was so relieved.  I was going to get to meet her.

Darla was whisked back to Children’s Hospital with her team.  Jon came back to my room with me to get me settled, and then he joined Darla at Children’s.  I wanted to go so badly, but it was too early.  Jon came back and, after moving me to the Recovery floor, the doctors from Children’s called us.  They wanted us to come to see her.  

When we got to Darla’s room, I was immediately afraid.  There were so many people there.  Who were these people, touching my baby?  The doctors saw us and the crowd parted.  I could finally see her, she was so small.  At that moment, I would have given anything to fix her. 

I couldn’t believe all the love I was feeling, it was unreal.    

The doctor approached us and let us know that she wasn’t doing well on the first ventilator.  They were going to try switching her to another ventilator, but they wanted us to be there before they did…just in case.

I stepped up to her bed, and I couldn’t believe I was looking at her.  It was the first time I really looked at her face, and I couldn’t believe how beautiful she was.  This was the little person that had been dancing inside of me for those 30 weeks.   

I had never felt love like I felt for my Darla Jane. 

Once we spent a little time with her, they switched her ventilator.  To their surprise, she started to improve.  When the doctors felt good about her and said she was stable, they suggested that we go back to my room and get some rest. 

We had been sleeping for about 45 minutes when Jon’s phone rang.  I knew it was Children’s and I knew it wasn’t good.  I hated myself for ever leaving her room.

When we returned, her room was almost empty.  It was just my sweet girl and her nurse, monitoring her vitals.  The room was so quiet and peaceful.  Darla was dressed all in white with a beautiful hat on her head.  She was all ready to be an angel. 

When we came in, her nurse said, “She knows you’re here, I can see it.”  I felt my heart lift and drop all at once.  Someone so small and fragile felt comfort and safety knowing that I was there. My baby knew me.  I will carry that with me forever.

The nurse gave us a box of keepsakes: a tuft of her hair, her handprint, her footprint, and a plaster mold of her hand.  I was so grateful.  These were all things that I didn’t know I’d need.  The box is so special to me.  It reminds me that she was real.

Jon and I took turns holding her.  She was so tiny and soft and fragile.  We talked to her, and told her how much we loved her.  Over and over again, we repeated “I love you,” and “You are so perfect, just like you are.”  It was so important to me for her to know she was loved.

We eventually stripped her down to just her diaper, and I took her in my arms and we cuddled for hours.  I fell asleep a few times, holding my baby.  I have never felt so much love and pain, happiness and sadness, at the same time.  I wanted to stay in the moment forever.  It couldn’t last long enough. 

The longer I held her, the more helpless I felt.  I wanted so badly for her to stay.  I begged the nurses and doctors to please try something else.  “There isn’t anything else you can do?” I could see the pain in their faces when they told me that there wasn’t.  This was it. There was literally nothing they could do.  She was slipping away.

After a day of loving her, 12 hours of being new parents with a new baby, we couldn’t have her any longer.  Our sweet angel was going back to heaven after too brief a visit.  We had to say goodbye.

Darla Jane Western passed away in my arms, surrounded by more love at that moment than some people feel in a whole lifetime.  As quietly as she came into the world, she slipped away. 

As we left her room, I turned back to look one more time.  I couldn’t help but focus on her little lips.  “Those are perfect lips,” I thought, “they have to be kissed, even just once.”  So I went back, and I kissed my baby goodbye. 

When I was first pregnant, I remember seeing this quote: “No one will ever understand the strength of my love for you; you’re the only one who knows what my heart sounds like from the inside.”  In the months that followed, I began to understand it fully.

She knew me.  I knew her. 


I keep a card close to me that we received from an old family friend:

“Let the arms of heaven hold you close so He can whisper these words in your ear, ‘Oh yes, I know about loss.  I know it’s hard to live in this world.  I understand.  I count your tears.  I’m here with you, for you, surrounding you with comfort and peace until you step into eternity, where I promise to wipe every tear from your eyes forever.’ ”

Even though she isn’t here with me physically, she is in my every day.  Even now.  Her life solidified my faith.  She rooted our marriage.  She is in her sisters: they all have the same nose and the same fighting spirit.

My three girls – Darla Jane, Gracie Kate, Avery Joy: my darling, my grace, my joy. 

Thank you for making me mommy, my brave girls.

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