Meet Shannan Wierzbicki: Coordinator for Mended Little Hearts of Volusia County

July 12, 2012

My name is Shannan Wierzbicki, I am the Coordinator for Mended Little Hearts of Volusia County. I started our group in July 2011 and support families in Volusia County, FL. We meet the second Friday of every month at Halifax Medical Center, France Tower Classroom D, Daytona Beach, FL from 6:30pm-7:30pm. Mended Little Hearts is important to me because my son was born with multiple congenital heart defects, and now that he is healthy and strong I felt it was important to start a local group and help the families of my area. I remember how important it was to me to have someone to reach out to who knew what I was going through. Visit our website for more information about MLH of Volusia County We are also on facebook as Mended Little Hearts of Volusia County. You can visit either of those sites to get updates and see what we have been up to.

The day after mother’s day 2008 I found out I was pregnant. My husband and I had tried for a long time to have a baby and to find out after Mother’s day was the best gift ever. Everything was going great during my pregnancy up until my 19 week ultrasound. That day was supposed to be a happy one. After we found out the sex of the baby, we were going to register for my baby shower. I also thought it would be nice to bring our older children to let them see their brother, only our oldest daughter could come with us. Mother’s intuition is a funny thing, I remember as we were on the way to the appointment thinking to myself “what if there is something wrong with the baby? I wouldn’t want Kaylei there.” I just brushed it off as me being paranoid.

We got to the hospital where I would have my level 2 ultrasound because I was in the “old” category of being pregnant and waited our turn. Once we were called I was excited and scared at the same time. I got up on the table and the tech came in and started the ultrasound. I am a nurse and have seen many ultrasounds and know what the face of a tech looks like when they see something wrong. After she told us we were having a boy, I started to cry happy tears, then I saw her face and my tears stopped and fear began to take over. She tried to put on the “everything’s ok” face as she went out to get the doctor. When he came in and started to focus on the heart I knew something was wrong. “Your baby has something wrong with his heart” he just blurted out. At first I had to have him say it again because I didn’t think I heard him right. As he told us again that our son had an underdeveloped right ventricle and his main arteries were in the opposite position I froze with fear. I wanted to scream so badly but my daughter who was 13 at the time started to panic and cry uncontrollably. The nurse took my daughter out of the room and prepped the room for an amniocentesis. Thankfully my mom was working that day in the same hospital and I had to call her and have her come down. That was the first time I had said “the baby has something wrong with his heart”.

After we got home, I went to bed and cried myself to sleep while my husband starting looking online at the best place to have him and try to figure out what Heart Defects he had. After meeting with the pediatric cardiologist, she reviewed the fetal echo I just had done and she came in and explained everything to us. All I cared about is whether he was going to live. She told us that Roman has Tricuspid Atresia, TGA, VSD, and, ASD. Needless to say the rest of my pregnancy was filled with fear.

We decided to have Roman delivered in Boston and for him to have his surgeries at Children’s Hospital Boston. January 19, 2009, Roman was delivered via C-section. I got a glimpse of him before they took him right away to the NICU.

This is Roman just after his Fontan

January 27th he had his Norwood and we thought everything was going fine until 6 weeks later as we were waiting to go to the airport, Roman started to go to the bathroom and I thought to myself better here than on the plane. When I opened his diaper, there was nothing but blood and every time he pushed more came out. I panicked and ran out to any nurse that walked by. Within minutes, there were general surgeons, and his cardiac surgeons and doctors there and of course our discharge was canceled. He was rushed back to the CVICU where it was found that he had necrotizing enterocloitis. He had a central line placed and TPN and lipids were started and after 2 weeks of gut rest, we tried to feed him, but the pneumatosis was back. That happened one more time before they took him back to surgery to put clips on his shunt to make the diameter smaller hoping to force more blood flow to his gut. After 2 more failed attempts, he was taken back to surgery for his Glenn. A month after his Glenn we were finally able to come home! We had a great year and on his 2nd birthday we went back to Boston and he had his Fontan. He has done amazing and thankfully no further complications. He has more energy than I have seen in a toddler with a whole heart. He is our hero and we feel so blessed to have him with us today as he brings such joy to our family.


One Response to Meet Shannan Wierzbicki: Coordinator for Mended Little Hearts of Volusia County

  1. Shannon Hutcheson
    August 26, 2012 at 2:21 pm

    Thank you so much for your story, Shannan! I have a wonderful, 2 yr old little boy who was also born with transposition, tricuspid atresia, VSD and ASD. He underwent the Norwood at 6 days old and the Glenn at 6 months. He has an appointment on Tues and we are hoping his cardiologist will give the thumbs up for the Fontan to happen before the end of this year. I’m so happy to hear that Roman is doing so well. You have most definately given us hope that we are almost done with the truly difficult part!