On August 16th we were found out that the birth of our 8th child will be unlike any of the previous. We were told our child was diagnosed with some major heart defects that would greatly impact his life after birth. He was diagnosed with Double Outlet Right Ventricle, Ventricular Septal Defect and aortic stenosis. In efforts to share the journey of our baby through these challenging moments, we have set up this site. Additionally as any journey begins for a child there is also the impact/reaction of the parents when they first learn about their diagnosis. Below is a bit of our own journey as parents and how our faith has and will carry us through these times.
A way to share the journey of our baby boy, who the Lord has touched in a special way, is the reason we are putting this page together. We want to share our journey together with our family and friends to help explain what beautiful gifts we encounter on the way through the graces of our faith.
Reality was about to change when the journey started on August 15, 2019, the feast of the Assumption of Mary. We had what was supposed to be like many before, a 20wk ultrasound for our soon to be born 8th child. This was just like so many other ultrasounds and the routine was all the same. We were filled with joy to see our little gift. What should have been a quick 15 minute ultrasound, kept going longer and longer. Finally the doctor came in and asked us to come to his office.
This is the point you know something is up, but not sure what. It is here that we were informed that our baby boy has something wrong. His heart was not functioning as it should and we should immediately see a pediatric cardiologist. The full extent we did not yet know, but what we knew for certain was that God has a plan for everything. Being blessed to live right outside of Philly, we have two really great children’s hospitals, CHOP and Nemours to choose. We were able to get an appointment at Nemours the following day August 16th.
Having spent the night restless, the day started with the normal hustle and bustle but there was also an air of anxiousness and wonder in what the day would bring. Upon our arrival at Nemours we were amazed at the technologies present and thanked the Lord for giving those individuals the knowledge and intellect to invent such devices. After about an hour+ intense ultrasound of the baby’s heart, we were brought into a consultation room and presented a drawing of his heart with the findings. It was a total of 6 different problems with 3 of them being major, but the total summary is that this is very unique. The left ventricle wall of the heart was not completely formed and he also had Double Outlet Right Ventricle and Aortic Stenosis. Medical terms that were of course foreign to us then, but all too common now. They walked us through what the road would entail and what the plan would be. Massive surgery a few days after he is born and multiple surgeries through the first few years of his life. We were shocked, but Nemours seemed quite certain this was the straightforward plan. We asked our questions that we could think of and left thanking them for their guidance and support.
Undoubtedly as we left, the daze of what we were just told started to sink in. We’ve been given updates before that were not “normal” when Peter (now 4) was diagnosed with Autism, but this was now something that is life-threatening. The next few hours we were both physical there, but mentally absent. How could this be and why our little guy? We’ve had 7 other perfectly fine, healthy babies, why this one? Feelings of despair and confusion did sit in. I even took the kids to the pool and was physically there but mentally just staring off into the distance.
Recognizing that I was not present and still in a state of confusion, Mary suggested I go to Adoration. For me Adoration has so many times in my life brought consolation, wisdom, peace and clarity and as well it is where I’ve heard and felt the Lord speak to me directly. So with that I did not waste time and went.
Jesus alive in the Eucharist and present with me in Adoration is what I needed. As I brought with me my heavy worries and burdens, I knew I couldn’t do it alone. Upon entering the small chapel, it only took but a few moments. With tears running down my face, I looked up and saw Jesus crucified on the Cross. A crucifixion that happened because of my sins and those sins are what put Him up there. But as I continued to gaze upon that image, I felt a great rush of peace and love. Peace and love from knowing that Jesus died on that Cross for me and for all of us. That if he could lovingly and willingly put himself up there, then he lovingly and willingly will be there for Mary and I during these times.
Under no circumstances would Jesus ever abandon us, it is only us who abandons Him. He is always there with his hand outstretched to ours, it is just a matter if we reach out and grab it. At this moment, I jumped and grabbed hold of his hand so tight that I will never let go. Jesus has got this!
During times of struggle and darkness God’s light shines brightest. This for me was a dark time and His Love was a beam lighting up the sky. After that moment, I had utter and complete trust. I knew that no matter what our faith will guide the way and our love for the Lord will give us all the strength we need to face the road ahead.
Even if the road is bumpy or there are great challenges, it is all in His great plan. Seeking another opinion, we decided a few days later to go through the same ultrasound process at Children’s Hospital of Philadelphia (CHOP). We were given roughly the same diagnosis but one thing was different…The doctors had put on the table the option for an abortion. Before they could even finish the words, we put a stop to them mentioning it ever again. The obliged and then continued to communicate what their course of action was. The doctors at CHOP weren’t sure what they would do. They simply answered that they have some plans of what they would like to do, but it would be our little guy in the end, who would dictate what could be done. This for us just felt for some reason more reassuring and we felt comfortable in their patience, caution and expertise. After further testing and subsequent visits, they now have given us a date when the next chapter will begin, December 18th.
So please join us on this journey of God’s plan for our Baby LeTourneau. Joyfully, the Lord will guide us all and give us comfort and strength. All we have to do is answer His Yes and give it all to him. Not my will, but His Will be done! O Jesus, I surrender myself to you, take care of everything.