It was mid-June of 2016 when we learned that the baby we had been planning for was on his way. Jimmy was ecstatic another Texas Rangers fan was joining the family. However, our joy was short lived. Toward the end of the first trimester, James’ ultrasound showed some abnormalities. We immediately went to a perinatologist for testing but were not able to get any concrete answers. We had to wait for James to get bigger so the doctors can get a better look at him.
It wasn’t until James was 20 weeks that the perinatologist and the pediatric heart specialist were able to confirm he had a Single Ventricular Heart Defect. We learned about the condition and the surgical procedures it would entail. There would be three, if he could make it through each one - one at birth, one around 6 months, and another around age 3. The odds weren’t great, but there was a chance.
That wasn’t all. The perinatologist told us James had a kidney that was not functioning. He also believed James had an additional abnormality but couldn’t be certain this early on. We were overwhelmed with the news of the heart condition and kidney already. What more could there be?
Weeks passed with more doctor visits to the perinatologist and the heart specialist, but no new information. We also had to be transferred to a new OB and hospital to have the Level IV NICU care. Then at 28 weeks James was diagnosed with Congenital Diaphragmatic Hernia. His stomach had occupied the area where his left lung needed to form. We wouldn’t know how much lung tissue he would have, if any, until he was born and tried to take his first breath.The combination of his medical conditions meant that his chance of survival were very little to none. We were devastated.
But after the tears, we picked ourselves up. We did everything in our power to give James the greatest chance. We did the research, met with different doctors, consulted with surgeons, consulted with the NICU team, did an MRI, and took steroid shots that the doctor suggested. Whatever was suggested, we did it. In the meantime James was kicking and growing strong!
Finally it was time to schedule the delivery at 38.5 weeks as planned. We arranged for all the doctors, specialists, and surgeons to be ready and on standby. We felt as prepared as we could be. All of our family were at the hospital waiting to meet baby James.
James arrived on January 31st at 5:13 pm. The NICU team took him immediately and had to place him on the ventilator. They ran tests and took x-rays to access James’ condition. Unfortunately the results were not what we wanted. His left lung had not formed and he was not able to breathe on his own. The ventilator could not provide enough oxygen to his body and with his already weak heart, James would not be able to survive.
We were able to spend a wonderful hour and a half with James off of the ventilator. We held him and kissed him and told him how much we love him and will miss him. We shared him with our family and they all did the same. James was always held by someone, either grandparents, aunts, uncles, his sister Hailey, or us. We tried to take in as much of James as we could and at the same time let him know and feel how loved he was. He eventually passed away peacefully in our arms at 10:50 pm on February 1st.
Although his time with us was brief, James was able to impact our lives greatly. He brought our family closer together and has taught us to cherish every moment. We are proud parents of our tough little one. We miss him immensely and think of him every day. He will forever be in our hearts.
We have kept our journey with James private, but in his honor we wanted to do something that would have a positive impact on others as well. Jimmy wanted to play ball with James the moment he knew about him. Having a softball tournament seems like a fitting fundraiser to help raise awareness and funds for CDH. Many people are not aware of CDH and how often it can occur in babies. With more awareness and funding for research, we hope that in time there will be ways of preventing or curing CDH, so other families would not have to go through what we did. Sharing our story and spreading awareness of CDH is the best way we can honor our son, James Reed Ly.
Thank you for your support,
Hien & Jimmy
Our Journey with James
Slideshow made by James' uncle, Alan Phan