Human Dignity

All aboard for Noah

Where do I begin with God’s glorious mercy over my life? I was born a Christian and raised in a very devoted family. I attended Catholic school all my life, faithfully went to Mass, read God’s word, and prayed every night before bed. But nothing could have prepared me for what my life would hold.

When I was 20 weeks pregnant with baby number five, I was overwhelmed with excitement to find out if I was having a boy or girl, so I decided to pack up the whole family for this special day. We were going to find out the gender of my baby and then go to dinner and celebrate! 

We all gathered around the ultrasound and rejoiced when she told us, “You are having a BOY!” Excitement filled the room. I was the proud mama of two girls and three boys. But it did not take long before I realized that the technician sat quietly focusing for an extremely long and unusual time on the baby’s organs. After what seemed to be an eternity, she stopped and only said to wait for the doctor. Having already gone through ultrasounds before, my motherly instinct told me that something was very wrong. My doctor, who was always so informative, became brief and uninformative in an instant. I was simply advised to see a specialist for a Level 2 ultrasound to make sure that all the organs were healthy.

A very sick little boy

On October 7, 2010, I sat alone—a huge bundle of nerves—waiting for the Level 2 ultrasound. I didn’t understand completely what was going on; however, I was very aware that something was wrong with my baby. After looking at the scan, the doctor explained what he saw. He suspected that my son had hypoplastic left heart syndrome. My baby had two heart chambers instead of the normal four. The doctor also told me that the baby had a club foot, had thick fluids behind his neck, and that he had a 40 percent chance of having Down syndrome. Shock, disbelief, pain, and confusion consumed me. I felt as if something was slowly sucking the life right out of my body.  

I called my husband, Joe, who was at home caring for our two younger children, to explain what was going on, but I could not get the words out, so I ended up hanging up on him. The doctor suggested that I go and pick him up and bring him back immediately to perform an amniocentesis. He recommended that we terminate my pregnancy. I have thanked God a million times because even though Joe and I may disagree on some things, this is not one of them. We would continue our pregnancy knowing our baby was a blessing from God regardless of any diagnosis. We thought of Jeremiah 29:11: “For I know well the plans I have in mind for you . . . plans for your welfare and not for woe, so as to give you a future of hope.” 

Shortly after that appointment, we went to see a cardiologist at Morgan Stanley Children’s Hospital of New York, and this was my first encounter with an angel in disguise. He performed a high-resolution echo that lasted about two hours. The doctor explained that the echo revealed that our baby had a rare and severe heart condition. On a scale of 1 to 10 (10 being the worst), he said our baby was a definite 10! His diagnosis was, in fact, hypoplastic left heart syndrome with very low function. The doctor explained that our son would need at least three open-heart surgeries to survive and that the mortality rate would still be very high. He expressed to Joe and me that the best option would be terminating the pregnancy immediately. He said our baby would destroy us as a family due to all the medical attention that he would need and that our other children would resent him and us for bringing such a “burden” into the world. We immediately stopped the doctor from continuing and explained that terminating our pregnancy was not an option. 

You may be asking, how is this doctor an angel in disguise? Well, when he heard our position, he immediately changed his tone and became compassionate. He advised us that he would treat our baby as if he were his grandson and that he would get the best team of doctors for him. The doctor shared information with us that could have jeopardized everything he had worked so hard to accomplish—his profession, his status, his livelihood—all for a little boy he never met. This change in attitude gave me incredible comfort and peace. 

God’s tender care

Baby Noah was scheduled to arrive on April 19, 2011, and I was anxious to get to the hospital to meet him. Joe, my sisters, my niece, and I arrived at 7 am to have the doctor induce my labor. We laughed, we prayed, and we read Bible stories. 

Noah made his debut at 4:17 pm. As slow as the day dragged while we waited for his arrival, things went triple time once he got here. The team of six doctors whisked him off to an examination room, and we got just a glimpse of Noah’s face before they left. Though this was hard for me, it was devastating for Joe. When I glanced at my husband, I saw deep pain and sadness in his eyes. He had just wanted to hold his son and whisper a quick I love you before watching him undergo testing. 

A devastating diagnosis

The following day, the surgeons decided to move up Noah’s surgery one day, which meant it would take place on day three after birth. Later that evening, the doctors confirmed that he needed open-heart surgery and that he did indeed have hypoplastic left heart syndrome. I ran to Noah as fast as I could and cried tears of agony. My heart ached beyond belief. 

I prayed to God, Who had delivered me from many situations in the past. Soon I would realize that He sent His angels to give me the peace, strength, and courage I needed to understand that I was not alone and that He would carry me through this situation. Looking back, I know that God has performed many miracles in Noah’s life, but moving up his surgery was the first. Not only did surgeons have to repair the hypoplastic left heart syndrome, but they also discovered that Noah had a double aortic arch, which they had to address immediately. After nine hours of surgery, the surgeon informed me that, had they waited another day, Noah would have choked to death because the veins from the double aortic arch were wrapped around his throat. Proverbs 3:5 tells us to “trust in the Lord with all your heart and lean not on your own understanding.” And this is what I did.

Noah encountered many complications. His surgeons had to leave his chest open for three days until the swelling went down; he was fed through an NG tube; and it took him three weeks to open his eyes. The doctors could not understand what else was wrong with him, as he had no muscle tone or control of his body. I begged to take Noah home and was told I could, but only under certain conditions. I had to learn to place an NG tube, which was so painful for both Noah and me (I had to put a plastic tube up his nose and push it all the way to his stomach), learn to keep his wound clean, and give him his medications. I begged God for strength, courage, and wisdom to care for my son’s needs, and, when Noah was four weeks old, I brought him home. 

Every day was a struggle, and Noah’s team of doctors had only negative news to share: His cardiologist said his heart was too weak and wasn’t functioning properly, so we had to look into a possible heart transplant; his neurologist said he wasn’t sure of Noah’s brain function; his orthopedist said that after his club foot surgery he wasn’t sure if Noah would even walk due to his low muscle tone; his GI doctor said he lost all function to eat by mouth and he needed a G-Tube and could not eat solid food; the ENT said due to constant ear infections he would most likely lose his hearing; and his eye doctor said his vision wasn’t great, so I should consider patching his eye. Then the genetics team stated it found a new and extremely rare syndrome called Kabuki Syndrome, which had caused Noah to have severely low muscle tone and that he would possibly never walk, talk, and would have many developmental delays. 

God’s presence felt

Here is when the voice of God was clear. Here He taught me to be still and know that, if I put my trust in Him, He would glorify Himself through Noah.  

Noah had his second surgery when he was five months old, but it was the third surgery at the age of two that, though the worst of all, was the most inspiring because God worked marvelous miracles beyond anyone’s comprehension. At his third surgery, Noah got three bacterial infections, which filled his organs with pus. Twice in four weeks he had to be rushed to the operating room for wash outs. My little boy was critical, lifeless, and extremely weak. With sadness in their eyes, the surgeons would tell me that Noah’s heart didn’t have the strength to withstand these surgeries. But little did they know that God would guard Noah’s heart and keep my mind focused on Christ. 

Noah was in the hospital for over three months. He came home with a PICC line, through which I had to administer his medications. For five months, he endured the PICC line—and it will be another year before we will see any improvements. 

Then, in November 2017, Noah was diagnosed with protein-losing enteropathy—a rare complication of his third surgery (the Fontan surgery) that causes children with heart conditions to go into heart failure. As a result, Noah was unable to retain protein, which caused him to become very weak. The doctors tried to control this condition with medications, but nothing worked. Even the possibility of a pacemaker was negated because Noah’s heart was too weak. He stopped walking and talking and was bedridden for months.

Throughout the entire time of Noah’s failing health, I trusted God. I continued to request prayers through Noah’s Facebook page. I dug deep into my faith and never stopped praying. In our darkest hour, Noah’s cardiologist called me and told me that there was a very risky procedure that could be performed. We agreed to do it. 

In July 2018, Noah had a fenestration procedure and, thank God, it worked! Today my boy is back in school, talking, walking, running, and playing! He is funny and inquisitive and keeps me very busy! 

Every two months he is seen by a cardiologist and he follows up with various specialists as needed. Noah’s heart is functioning as well as can be expected for a two-chamber heart. His vision and his hearing are normal. His club foot was fixed with a six-month casting, followed by a surgery. Noah does not have Down syndrome, but he does have developmental delays.

Noah is love—that pure, genuine love that could only come from God. Noah continues to teach us how special and beautiful life is, even with challenges. He fights through pain and suffering quietly with an amazing smile. My Noah never was and never will be a burden to Joe, his siblings, or me.

Noah taught me that faith does move mountains, prayer keeps you grounded, and love is the only true happiness that overcomes it all. God has been extremely good to us. He healed Noah’s heart, and He changed my heart forever.

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About the author

Lissette Diaz

Lissette Diaz resides in New York with her husband and five incredible children. She works as the assistant to the pastor of her church. In her free time, Lissette can be found surrounded by her family. They enjoy playing, reading, or just spending quiet time together. Lissette also finds great joy and peace reading scripture.