advertisement

Walk to Remember: 'A piece of my heart is gone forever'

Editor's note: Shannon Wagner of Bolingbrook will take part in A Walk to Remember on Saturday, Oct. 10, in Naperville. The walk benefits the SHARE Program at Edward Hospital, which helps parents through their baby's death by helping them preserve the few memories fate affords them and offers parents a place where they can share their experience, grieve and possibly rediscover hope.

By Shannon Wagner

Bolingbrook

In September 2013, we found out we were pregnant. We were going to be first-time parents. Chris and I both were beyond happy and so excited for all the firsts we would have with our baby.

I remember being so careful. I stopped drinking coffee, I stopped eating lunch meat, I took my vitamins, I scaled back my workouts. You name it, I did it. My husband liked to give me a hard time and said I was a little extreme.

Once we began telling our friends and family, it made it all so much more real. I ended up being pregnant with three close friends, and we were all due within a month or two of one another. How fun would it be to share our morning sickness stories, weird cravings and mood swings, and search Pinterest for all the nursery ideas?

I hadn't a clue that I would soon feel so alone, and that all of my joy and happiness would be taken from me, replaced with anger and sadness.

In January 2014, we went in for our 20-week scan. We were both so anxious to find out the sex of our baby. I thought it was a girl and Chris thought for sure a boy. We teased one another in the waiting room about it. Chris had the name all picked out. If it were a boy, he would be named Charlie Chase Wagner.

At the start of the scan, I noticed the image of my baby was difficult to see. The ultrasound tech measured organs with what she could in the blurry image before her. She told us she was not able to tell the sex of our baby due to its position, and she would take us to a room where the doctor would talk to us.

Chris knew right then something was wrong. He is always more intuitive than I, and I love that about him. I remember getting so angry waiting for the doctor. Chris kept saying something was wrong. I thought, no, how can that be? We were only here to find out if we were having a boy or a girl. Today, I look back and feel so naive and foolish for caring about the sex. All that matters ever is the health of your child.

The doctor came in and told us the horrible news. Our baby's kidney, or both kidneys, didn't seem to be functioning. That was why it was so hard to see the baby and get a good image. He explained I had dangerously low amounts of amniotic fluid. He said amniotic fluid was critical for protecting the baby, allowing them to move, for bone development and, most importantly, lung development.

I don't even recall the rest of what was discussed. I was in shock and broke down. I cried and kept looking at Chris. I couldn't think of one question and, of course, Chris remained calm and stayed strong for the both of us. He asked some questions and we left with a name of a specialist to call.

We received many texts from friends and family that evening asking what the sex of our baby was. I remember we told them the baby's legs were crossed and we will know at the next appointment. I couldn't handle telling people how horribly wrong the appointment went and we didn't even know much about what was going on.

We met with the specialist a day or two later and I had a 3-D scan. We did find out the sex of our baby through a blood test. We were having a boy, Charlie Chase. We were told our Charlie had something called lower urinary tract obstruction and, if he survived, he would be on kidney dialysis the first year of his life, and eventually he'd need a transplant.

The doctor explained he had seen only a few cases of LUTO in his time practicing, and because it was so rare, he couldn't tell us whether our baby would even survive birth due to all the unknowns.

We did a bladder tap on our baby to test the urine and kidney functioning three times (like an amniocentesis). From all the testing and appointments, we qualified for a shunt to be put in the baby's belly while in utero.

I would be awake for the entire procedure and, I was told, this could save our baby's life. Sadly, we found out the next day the surgery wasn't a success. The shunt came out and my amniotic fluid was still low. I was so angry and wondered why us, why is this happening to our baby while everyone else around me is having perfect pregnancies.

For the rest of my pregnancy, I was in the doctor multiple times a week for scans and stress tests, and I was even hospitalized a few times for preterm labor.

I was scared of so many things: Would he die inside me? Would he need a transplant? Would he spend the first year in and out of the hospital for dialysis? How would we be first-time parents and have all this to take on as well?

At about 35 weeks, I went into labor and the doctors tried stopping it again without success. Charlie was coming for sure. My doctor told us that, at 35 weeks, Charlie had a 15 percent chance of surviving. I was in shock and didn't want to deliver him at that point; I wanted a much higher percentage, or even a second option.

I was prepped for a C-section and Chris was by my side when they started. Once Charlie was born, I heard a loud cry and Chris saw him briefly before the NICU team took him away to be evaluated. I thought, “He cried!” This is the best noise ever for us.

They took Charlie while I was being stitched up and put in recovery. They had me pump and do all the normal things moms do after they give birth. Then I saw Chris come into the room, very upset.

“The baby isn't going to make it,” he said. “His lungs are not developed and he is on a breathing machine.”

I wanted to die right there and not have to face the worst thing a parent should have to face.

The first time I held Charlie was the best moment of my life. It was so bittersweet at that moment knowing he would be taken from us way too soon. We had both of our families with us in the NICU those two days. We all took turns holding him and loving him.

We went through something most parents don't have the courage to even think about. I am proud of us and all of the healing we have done the last year. It's a balance of joy and grief, and some days grief is much more present. I have thought about Charlie every single day since April 26, 2014, and that will never change.

In the aftermath, I tried to find the answer to “why.” It is something I will never know, and even if I did know, I would never be at peace with the answer. There is no reason for such a loss and a piece of my heart is gone forever. We had a lot of “firsts” this year like many new parents do, but ours were firsts without Charlie.

We have done what we can to honor him and always make him part of our lives and our future children's lives. I planted a memorial garden this summer out back that will bloom each year around his birthday every April.

My hope for the future is for my husband and me to have more children, for me to have a normal and very boring pregnancy of the usual morning sickness, weird cravings and swollen feet. I am excited about what the future holds for us, and Charlie has forever changed my life and so many people close to us.

Edward Hospital hosts walk to remember lost lives

Walk to Remember: 'A tiny bit of hope even in the darkest of days'

Walk to Remember: 'I wanted to be allowed to grieve'

If you go

What: A Walk to Remember

Why: Proceeds support the Wings of Hope Garden and the SHARE program at Edward Hospital for families who have lost babies during pregnancy or soon after birth

When: A memorial service begins at 9:30 a.m. with the walk at 10 a.m.; on-site registration starts at 8:30 a.m. Saturday, Oct. 10

Where: Riverwalk Grand Pavilion west of Centennial Beach, 500 W. Jackson Ave., Naperville

Cost: Free, donations and pledges requested

Info: napervillewalktoremember.org

Article Comments
Guidelines: Keep it civil and on topic; no profanity, vulgarity, slurs or personal attacks. People who harass others or joke about tragedies will be blocked. If a comment violates these standards or our terms of service, click the "flag" link in the lower-right corner of the comment box. To find our more, read our FAQ.