Our son Liam Daniel was born March 23, 2016. Every moment leading up to that day was normal.  The excitement and anxiousness were overwhelming as my husband and I tried to finalize his full name as they administered my epidural.  The delivery was smooth but we noticed he was smaller and his color was different than our previous 2 boys.  We didn’t think anything of it at the time as he came out crying and he appeared to be passing all the newborn screening tests with the exception of his ability to sustain his oxygen level above 80%, but there didn’t appear to be a cause for concern. He went straight to the NICU for observation before my husband or I even got a chance to hold him. The following day he appeared to be recovering from the delivery and they were ready to release him to us until the doctor decided to order an echocardiogram (echo) since his heart murmur sounded slightly different than others. The news was relayed to us that he may have Tetralogy of Fallot, Pulmonary Atresia, and CAVC but would need a CAT scan to determine. We transferred to Methodist Children's Hospital by ambulance and the following day he was diagnosed with Truncus Arteriosus and CAVC. We were in complete shock as we talked to the doctors about Liam’s diagnosis. We were told that his condition was very rare and they would need to operate within days. The surgeon told us many cases similar to Liam's have been found post-mortem. So we prayed and believed God Liam would get through this. The first surgery was performed at 6 days old to correct the Truncus Arteriosus and was successful, but we were told he would need another surgery at six months to complete the CAVC. After six weeks in the NICU his neonatologist told us that he was always such a happy baby, smiling, and laughing even despite the circumstances and his cooing was evidence that it was time for him to go home.  We finally got to take our angel home right a few days before Mother’s day.

 After his first surgery, his cardiologist prepared us for the months ahead with an emphasis on him gaining weight. Liam’s heart was still working harder than normal with the mixing of blood due to the CAVC defect. He also had reflux which peaked at 4 months. Because of this he was diagnosed with failure to thrive and was admitted twice before his upcoming surgery to try and gain weight. We tried fortifying his breastmilk and formula and finally in September he came home but with an NG tube. Through it all Liam always had a smile on his face.

When Liam was seven months it was time for his second surgery.  He came back from surgery and everything was great. Vitals were slowly getting better but his pressure was a little high. We were told this was expected and they should start to drop. On November 2nd, Liam's blood pressure bottomed out and he was put on bypass in hopes his heart would start to beat again. Our family, friends, and pastors prayed throughout the night for healing. Even though we envisioned it differently, Liam left his failing heart and went to be with Jesus that night.  We were told after the autopsy that he had a pulmonary hemorrhage coupled with a reperfusion injury.

Liam touched so many lives with his smile, love of life, and perseverance. We were blessed that God gave us Liam for seven wonderful months and we cherish every day we spent with him. He filled our lives with so much joy and he will forever live in our hearts until we meet again.

““Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these.” Mark 10:14

Shortly after Liam’s transfer to Methodist Children’s Hospital and his diagnosis we were given a book titled “It’s My Heart”. This book was written by The Children’s Heart Foundation and was instrumental in guiding us through the medical terminology, anatomy, diagnosis, prognosis and so much more. This foundation is so important to the patients and families affected by Congenital Heart Disease.  If you would like to donate to the Children’s Heart Foundation in honor or memory of Liam you can do so at the following link :

In memory of Liam