Levi's Song

Diagnosis: HLHS

By Danielle Fehr, May 19 2010

I was pregnant again! Not even a year after I had my first born. I was so excited! I'd figured I was just being paranoid, because my mothers second child had died from HLHS at 3 days old, and she'd told me before that she'd always known something was wrong with him; so when I began to feel like there was something wrong with mine, I told myself that it was nothing, and I was thinking too much about my mothers experience. No one wants to believe that there is something wrong. Nothing was wrong. So why was I always questioning how much he moved, or rather, how little? I tried to ignore it. Remain positive.

At 22 weeks I had a doctors appointment, but when I went in I got a "oh, I'm sorry, but your Doctor is out sick today, you'll have to reschedule." That pissed me off a little, made it there and had to go home. I was desperately awaiting my second ultrasound. The one that would tell us whether Dexter (our one year old) would have a brother or sister. "oh it's a boy," my hubby told me. He always knew.

At exactly 24 weeks I had my ultrasound. The secret smile playing about the technicians lips as we guessed the sex of our baby told us our answer. It was a boy. Oh, we'd known that already, Brandon joked. But she was having trouble finding the right heart measurement. "Can't get the right angle," she kept saying. I rolled on my side, I rolled on my other side, still nothing. She went to get another ultrasound technician, saying that the last time they were having trouble this other girl could get it. Still nothing. The Radiologist came in, and had a look. He then mumbled quietly to the two girls and left the room, leaving us there wondering what the problem was. Two minutes later, he came back in with the first girl and, looking very somber, told us that our sweet boy had something wrong with his heart. As soon as that left his mouth I didn't hear anything else. I thought of Adam, my brother who would've been older. That was it. Even though we didn't know yet what exactly was wrong, I knew that what Levi had was the same as what Adam had. I can't explain how I knew the whole time, I just did.

Back at home and waiting for a phone call from Vancouver. The doctors took their sweet time with getting the paperwork to wherever it needed to go so we ended up waiting a week to find out just when our appointments were. Four different ones that would crowd each other on the morning of May 6th. We made plans to go for lunch in between. That never happened. Instead all the appointments were so long they kind of melded into one, and at the end our heads were spinning and tears were running, as we tried to comprehend the choices we would have to make for our baby.

Option one ? transplant- close to a 50-50 chance of survival. The success rate for heart transplants for babies dropped by 20% in the last 5 years because the medical advances in the last couple years saves so many babies, leaving next to no hearts for transplant. Doctors said he'd most likely die waiting.

Option two? Norwood surgeries. A complicated series of 3 open heart surgeries all done within 7 days - 4 years of life. The over-all success rate they gave us was around 65%, saying that it was the first surgery that was so tricky because their little bodies are barely a week old, and many complications can arise, which can lead to more surgeries. They really tried to be optimistic, but the numbers speak for themself.

Option three? Termination - I always hated that word from the first time I heard it. No one wants to "terminate" their baby (and I really couldn't help but think of Arnold Schwarzenegger, thanks a lot.) This was a 'maybe' for us at first, mainly because the cut off date for terminating pregnancies was 24 weeks, and I was exactly 26 weeks. A committee would have to be formed and they would have to agree that is was in the best interest of the child.

I couldn't eat. I felt sick, I felt faint, I wanted to just run away. Ignorance is bliss, and I'd so wanted to believe my baby would come out perfect. Healthy. I cried. I couldn't stop, thinking of if we kept him. His little body would have to go through at LEAST 3 major surgeries, and then tube feedings, daily injections, all for living life "at the back of the pack", as the doctor had said. I remember saying through my tears "kids shouldn't have to live life through a tube." And that was our decision.

The committee was formed, and they agreed. So, at 7pm on may 6th I was admitted into the Women's and Children's hospital in Vancouver to stop his heart, and deliver my dead baby. It was the hardest choice we've ever had to make.

The chemical used to stop his flawed heart was administered by needle, to the left of my bellybutton. So there we were. "Close your eyes babe," Brandon said to me, stroking my hair. We let our tears fall, not sobbing, but grieving, knowing it was ultimately our decision. I felt one last kick.

This part was just numb. Having to sit there, still pregnant, but knowing that what's inside you isn't alive anymore is heartbreaking. just couldn't feel anymore. I don't know how I survived a whole day of waiting to go into labor, in my condition, but I did it. While waiting, I was getting sick of hearing all the happiness around me - seeing happy family members darting in and out of rooms. Rooms full of new moms, and new babies. New, healthy babies. So we turned the radio on.

May 7th at 5.04 pm Levi Adam was born. 940g, 36 cm. He was almost perfect. The only sound I heard when he came out was the song on the radio. It was Lynyrd Skynyrd's song Free Bird; it gave me great comfort, while waiting to hold my little boy. It is Levi's Song.

As of writing this, its been only 3 months since his birth, but I'm healing, and I'm growing. He's inspired me to do something that I thought I'd never do again. My lost art.


Such tiny features
Upon a tiny body frame
With his hair just budding
He never knew his name
He lived and he died silently
When born, he had no life
Never knew fear, nor pain
Or any earthly strife
I cherished every movement
Made by his tiny feet
Pressed up against my belly
Making me crave chicken meat
Then, when told of a defect
I had lost my voice
A mother becomes broken
If faced with this choice
"Let him suffer through life,
Although he may die
Or, put him to rest -
Don't even try"
When a moment of silence
Drifts by my ear
When the world is still
To me it is clear
That my Levi is soaring
His spirit is free
And I hope he knows
How special he is to me


Books on Loss and Grief

Our Heartbreaking Choices: Forty-Six Women Share Their Stories of Interrupting a Much-Wanted Pregnancy

The Dive :: A Memoir

A Time to Decide a Time to Heal: For Parents Making Difficult Decisions About Babies They Love

Precious Lives Painful Choices: A Prenatal Decision-Making Guide

Sunshine After the Storm: A Survival Guide for the Grieving Mother

Empty Cradle, Broken Heart, Revised Edition: Surviving the Death of Your Baby

Empty Arms: Coping With Miscarriage, Stillbirth and Infant Death

A Silent Sorrow: Pregnancy Loss

Unspeakable Losses: Healing From Miscarriage, Abortion, And Other Pregnancy Loss

Surviving Pregnancy Loss: A Complete Sourcebook for Women and Their Families

Difficult Decisions: For Families Whose Unborn Baby Has a Serious Problem

Books for Fathers, Family, Children and Friends

Couple Communication After a Baby Dies: Differing Perspectives

For Better or Worse: For Couples Whose Child Has Died

How to Say it When You Don't Know What to Say: The Right Words For Difficult Times

A Guide For Fathers: When A Baby Dies

When Your Friend's Child Dies: A Guide to Being a Thoughtful and Caring Friend

When Pregnancy Fails: Families Coping with Miscarriage, Stillbirth, and Infant Death

What You Can Say When You Don't Know What to Say: Reaching Out to Those Who Hurt

Books about Trying Again and Pregnancy after Loss

Journeys: Stories of Pregnancy After Loss

Trying Again: A Guide to Pregnancy After Miscarriage, Stillbirth, and Infant Loss

Pregnancy After a Loss: A Guide to Pregnancy After a Miscarriage, Stillbirth, or Infant Death