✨ Proof There’s Gold at the End of the Rainbow

Written by Amanda

After years of wanting a baby of our own, in November 2024, I found out I was finally pregnant. In January 2025, we found out our little miracle was a precious baby boy. That March (on St. Patrick’s Day), I had my anatomy scan, where the technicians found something irregular with his heart. My ob-gyn told me it was most likely nothing, and that they probably couldn’t get a clear image, and not to stress it. She told me a pediatric cardiologist’s office would contact me to schedule a fetal echocardiogram. After what felt like an extremely long weekend, I received a call Monday morning from scheduling letting me know that they had an opening that day. I ran to the office immediately.

The technician came in to take images of his heart, and there was a doctor observing. Once the echocardiogram was complete, she told me a cardiologist would be in soon to speak with me. He took an extremely long time to come in, and I could tell by his face that it wasn’t good news. You could tell that he was uncomfortable having this conversation and didn’t really know where to begin. He diagnosed him with TVD (Tricuspid Valve Dysplasia) with a high risk of hydrops fetalis. He said that the blood that should be traveling to his lungs was not, and it was leaking back into the heart, and that he only had four more weeks to live in utero. He told me it was in the baby’s best interest to terminate the pregnancy as he would “feel pain” once he was born. That wasn’t an option for us; we knew we needed a second opinion. And I knew we needed prayers. We had all our family, friends, and many more praying for our sweet boy. I went to church just about every day and became very close to my faith. It brought me so much comfort and peace.

For additional opinions, we went to NYU and Columbia, where they diagnosed him with PA/IVS (Pulmonary Atresia with an Intact Ventricular Septum). Although we were relieved to finally have the proper diagnosis, we were scared for what was to come. After meeting with cardiologists from both hospitals, we met with the surgeons and even did a hospital tour. We ultimately fell in love with NYU and felt that it was going to be the best path for our son.

There were basically different tiers of severity when it came to his treatment. We weren’t sure if he was going to be a bi-ventricle case, 1.5 ventricle, single ventricle, or transplant. Several procedures/surgeries were all possibilities…but we didn’t know what our best options were until he was born. So I continued with our fetal echo appointments and was transferred to an MFM office in Manhattan. It was important to make sure that there wasn’t too much fluid building in his heart/lungs, otherwise he would have to be delivered asap. So we continued to monitor. We had a plan set in place for induction, and that immediately after birth, he would go to the NICU and then to the cardiac wing at the attached children’s hospital. MFM basically wanted me to go as long as possible, but the cardiologist team was concerned, so they had me get sonograms and NST exams twice a week as I became closer to my due date. After one poor NST, I was sent to the hospital. Everything was ruled out to be ok so I was sent home. Then a week later, the same thing. Another poor NST, immediately sent to the hospital…except this time, I was being admitted. The baby wasn’t responding well, and the doctor was afraid to attempt an induction because they didn’t think he could handle it. We continued to monitor the baby and my blood pressure. Once things appeared to improve, I was set to be induced. After starting the induction process, the baby wasn’t reacting well; therefore, we needed an emergency C-section. While in the OR, the team was shouting that his heart rate was dropping.

Luke, our little warrior, was born in July at 7 pounds 2 ounces. The umbilical cord was wrapped around his neck twice, but I heard his cry and had a wave of relief come over me. Even though our long journey was just beginning. They rushed him off to the NICU, where he stayed overnight until he was transferred to the CCVCU (Congenital Cardiovascular Care Unit). After I was discharged, I went over to the children’s hospital where I stayed with him. It was extremely difficult and heartbreaking to witness his condition. But we knew he was strong! The plan was to monitor him, to make sure his ductus stayed open so that they could place a stent there, but they needed to make sure he was strong enough to undergo the procedure. Day in and day out, we waited.

Once they decided he was ready for the cath lab, they decided his ductus was still too large and wouldn’t properly hold the stent. They continued to perform echocardiograms to watch the progression of the ductus closing. All the while this was occurring, Luke was unable to release enough carbon dioxide, and he had to be intubated immediately. It was late at night, and I was rushed out of the room. The doctor advised me that they were unaware of his anatomy with his sinusoids (they weren’t sure if they were intertwined), and basically prepared me for the worst. And even though it only took them a few minutes, it seemed like forever that I was waiting in the lobby.

After one feat, we knew the cath lab was next. At 11 days old, Luke went for his first procedure. Again, the doctor prepared me for the worst and told me they wanted to get him comfortable and stable so that we could go home and come back once he was bigger and ready for surgery. Once the procedure was complete, the doctor told me they didn’t put the stent in. I was extremely confused and concerned. Turns out, he didn’t need the stent! They were able to perform a balloon angioplasty, where they opened his pulmonary valve to get the blood flowing to his lungs! It was truly a miracle. Everyone in the hospital was amazed by his results.  After two weeks of him learning how to feed from a bottle and proper weight gain, Luke was discharged from the hospital, and we were finally on our way home back to Long Island.

In September, (he was about two months old), at a follow-up cardiologist appointment…she advised us that due to his rapid growing rate, he needed to go back to the hospital. His pulmonary valve needed to be opened further to get more blood flowing. I was devastated. I thought we were in the clear for a while. And as amazing as everyone was in the hospital, I didn’t want to return. Especially so soon. But she assured me that it would just be an overnight stay, that they would perform the balloon angioplasty again, and everything would be okay. And she was absolutely right. We weren’t even in the hospital for 24 hours before we were sent back home. The procedure went very well, and his follow-up appointments have been great ever since.

Our little heart warrior is thriving. He’s currently 8 months old and is doing amazing. Even though his CHD has changed our lives, and we will always worry about him (just as any other parent does), it does not define him. We truly are so blessed, and so lucky he is ours. We can’t thank his outstanding medical team enough, as well as everyone, for their continued prayers and support. I can’t imagine our lives without our special boy. We are so grateful for finding the Heart Heroes organization and for his personalized Heart Hero cape. Even though he’s still a baby, he wears it so proudly. It’s a reminder of his strength and resilience. We’re so excited to see what the future has in store for our little hero.