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A Father's Unbreakable Bond: Embracing Life with Down Syndrome

Updated: Feb 21


a father holding his son

On January 21, 2023, I had no idea what was in store for me. I had a great job, a beautiful wife, and a lovely little family that was about to become bigger that day. But, my picture perfect life was about to be torn to shreds. 


For 37 weeks leading up to this day, my wife had a glowing pregnancy. We were so excited for our second child that we didn’t even want to find out the gender just to add to the glorious moment when we would meet our baby for the first time. When the time came we headed to the hospital, barely made it to the delivery room, and met our beautiful baby boy, Noah. 


The first thing I noticed about my little boy was I couldn’t see any resemblance  from me or my wife. Time stood still for just a second as I thought that was weird, and in the back of my head I knew that couldn’t be right. That thought quickly passed as reality stepped back in and joy overcame me. 




THE NEWS

The pediatrician came into the room, and asked if he could talk to us about Noah. My heart sank as that passing thought came to the forefront of my mind. The pediatrician started to say that Noah had features of a child with Down Syndrome and listed them out, with Noah having most of the features. He then went on to explain Down Syndrome and everything it entails (within the confines of the 15 minute conversation we had). I was doing my best to listen but all I could think was “man, this doctor’s delivery is amazing. His voice is so empathetic yet hopeful, and he’s giving us the news using just the right words. I wonder how often he does this.”

down syndrome t21

The doctor had also explained that Noah had a Complete AV Canal, meaning there were three holes and only one valve in his heart. His oxygenated blood, and deoxygenated blood were mixing causing his body to receive less oxygenated blood. The doctor described this as being in a constant state of working out. This problem could only be solved by surgery. My son was going to need heart surgery. Luckily, it wouldn’t be needed until he was between 3-6 months, so I was told. The early diagnosis came as a complete shock to me and my wife as we had no reason to even question the health of our baby boy throughout the entire pregnancy. 


Finally, after the pediatrician left, they brought in our newborn son, Noah. As the nurses rolled him our way, the first thing I did was analyze his face, and all the features the pediatrician had described. That thought appeared yet again, I couldn’t see any resemblance from me or my wife. Sure enough, Noah had most of the described features related to Down Syndrome. While I recognized all this, I was still delighted that I could hold my sweet baby boy. Nothing else mattered at that time, just me and my son. 




GO FORTH AND SPREAD THE NEWS

The next day, my wife’s family came to visit. As they all gathered around Noah, the gut-wrenching pain I felt about my son's diagnosis finally let loose. The room fell silent as I started sobbing up the words “So… they.. think.. Noah.. has… Down Syndrome.” As soon as I finished my statement my sister-in-law ran to my baby boy and gave him the biggest hug I’ve ever seen an aunt give. For the next few hours my wife’s family loved my Noah like I’ve never seen. 


After everyone had left I realized I needed to call my family and tell them the news. Again, that gut-wrenching pain flooded back into my body. As soon as my mom answered the phone, the same words came out in the same way. There was a long pause, then words of encouragement, prayer, and love for Noah started outpouring through the phone. My mom would go on to tell my dad, and get the word out about Noah being a healthy, beautiful baby boy who has Down Syndrome.


As I hung up, I realized how many phone calls I would need to make. I wondered if this pain would reappear everytime I told someone. “One more phone call for right now,” I thought.


a priest

It was to my priest. I needed prayer for my boy. 


The response from Fr. Nguyen that followed the news about Noah was something I’ll never forget: “How lucky are you. You get to witness a child of God.” That response felt like a 1-2 knockout punch to my already pain-filled body. I had been thinking there is something wrong with Noah, but, while my boy wasn’t normal (by society standards) he was still a child of God. Fr. Nguyen prayed for me, my family, and especially for Noah, spent some time encouraging me, and then we hung up.


As word spread about Noah during our stay in the hospital, so did prayer. Messages were flooding in with prayer, praise, and encouragement. It was surreal to see how fast the news was spreading, but more so just how many people already felt love towards Noah. 




Eligibility to Leave

The doctor’s said Noah had a few tests he would have to pass before he left the hospital, one of them being the Car Seat Test. He would be put in his car seat and needed to keep oxygen levels safe enough for 90 minutes. They said newborns with Down Syndrome have difficulty with this test and it may take a few days, or longer, for him to pass. 


Noah failed the first attempt at minute 65. The second attempt (12 hours later), however, he passed! Everything else had checked out, with exception to his heart, and Noah was safe enough to go home. We were set to go home the following day.


The Road Home

The last day of the hospital was a whirlwind of emotions and uncertainty. As the nurses helped us prepare to leave they were giving us immediate, Down Syndrome related information as well as reading material and items to research. 


a car driving off in the distance

Finally, my wife, my son and I were in our car ready to go. As we were headed home, I had a moment to myself, the realization of what lay ahead hit me. Noah’s life path wou dn’t be like our first born, he would need surgery, therapy, and more patience than a normal kid would need. 


The uncertainty for his life was overwhelming, I didn’t know anything about Down Syndrome and I didn’t know how I was going to help Noah. However, I did know that I’d love him like no other, and that was the only certainty I had. For the rest, I would need to rely on my faith. 


Another thought popped into my head on the drive home. A thought that drowned out all the noise from worrying. Now that I had a son, I would finally know that immense bond my dad felt when I was little, that bond between a father and his boy. 




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