‘Be careful not to startle him with sudden sounds.’ ‘A loud sound could kill our boy?!’ We were terrified.’: Baby boy with extremely rare LQT Syndrome, Microcephaly, Deafness defies all odds

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Pregnancy Complications

“When you are told something is wrong with your baby while you are pregnant, you are shattered. When you are ‘encouraged’ to terminate your pregnancy because of issues that may likely occur for your baby (if he even survives birth), you have every negative emotion to navigate through, or at least I did.

I was told at my anatomy scan they found abnormalities consistent with trisomy 18 or a different chromosome abnormality in my baby. I was angry this doctor would suggest such a thing as ‘terminate,’ but I knew that was her job. She was trying to spare me and my child from a life of suffering if he did live, but who are we to determine who will suffer? My son’s life was never an option. It had a purpose. I would protect my baby and fight to keep him safe. Little did I know how much he would fight to live also.

Many difficulties arose during my pregnancy, from my baby not growing well to him not moving well. I went into labor with him at 35 weeks pregnant. Our son was born weighing 4 pounds 5 ounces. He was alive! We named him Azariah, which means ‘Our God has helped.’ His name would go on to show how God helped him. Shortly after Azariah was born, he was rushed to the NICU due to an irregular heartbeat, being unable to eat, and IUGR (intrauterine growth restriction). I was not prepared for them to take my son away from me. However, what I was about to witness in that NICU was an entirely new world of heartbreak I was unprepared for.

Courtesy of Angela Smilovici

My tiny boy was inside an incubator, hooked up to nasal oxygen, two IV’s, and an NG feeding tube through his nose where he received 100 percent of his nutrition. Azariah was so tiny and weak but in his face, you could see he was so uncomfortable. He was fighting to cry but nothing came out. He was alone in an incubator that was going to save his life. A newborn baby all alone, longing for the comfort of all he knew that was safe: me. I could not hold my son for almost 7 days as he lay inside that incubator.

QT Syndrome Diagnosis

Shortly after Azariah was born is when they quickly realized how serious things were for him. The first thing they noticed was how irregular Azariah’s heartbeat was, so they did an EKG and an echocardiogram of his heart. ‘Your son has a serious heart condition called prolonged QT syndrome (LQT). It takes his heart too long to recharge itself between beats, which can cause sudden cardiac arrest and seizures.’

They needed to start him on mediations immediately. With this condition, they explained to us there are numerous common medications that can be dangerous for Azariah. We needed to run every medication by Azariah’s cardiologist before giving anything to him. They also told us, ‘Be careful not to startle Azariah with sudden sounds, like a phone ringing. This shock or startle could cause Azariah’s heart to go into a dangerous uncontrollable rhythm.’ We were terrified. A loud sound could kill our boy? ‘Lord, help Azariah,’ is all I could pray.

The cardiologist went on to tell us the team sent off blood work to check what type of LQT Azariah had, as this is a genetic condition. Genetic? So either my husband or I caused this? We needed answers. We then were told Azariah failed his hearing tests. They repeated the test a few days later. Azariah was deaf. Sensorineural hearing loss, permanent, unfixable. ‘How? How can our precious boy be deaf? How do we help our deaf child?’ The team sent off a microarray test to check for abnormalities in Azariah’s chromosomes.

Courtesy of Angela Smilovici

Over the course of several days, the doctors found one thing after another that was wrong with Azariah. Microcephaly (a small underdeveloped brain), hydronephrosis (water on his kidneys), two holes in his heart, and a serious heart condition. ‘What else will they find? What caused all of this? How could we fix these problems? How can I help my baby boy?’ A week went by in this NICU life as Azariah fought for his own life before I was finally able to hold my precious baby boy. He was so frail and I was so afraid I would mess up all the wires and IVs in my tiny baby. Finally, the neonatologist told us Azariah’s blood tests came back and he scheduled a meeting with all of the specialist doctors to speak to us about the findings.

We walked into the meeting room with five specialist doctors, a geneticist, and two of Azariah’s amazing NICU nurses that wanted to be by our side during this meeting. The geneticist led the meeting. I knew it was not good. She told us they found some significant abnormalities in Azariah’s chromosomes. He had several rare chromosome deletions. I quickly stopped her, ‘What, deletions? How are chromosomes deleted?’ I have heard about having extra copies of chromosomes but to have less of them? She went on to tell me these things just happen by chance and nothing I have done caused this. The cause was not caused by my husband or myself.

Courtesy of Angela Smilovici

In my head, I was thinking, ‘How in the world did this happen to OUR son, why OUR son?’ She went on to tell us there is no one in the world known to have some of these deletions. With the genes that are missing from the chromosome, there are known to be brain abnormalities associated with it, intellectual disabilities, seizures, feeding difficulties, eye and kidney abnormalities, and more. He may never walk or talk. His 7q deletion is known to also cause severe intellectual disabilities, epilepsy and prolonged qt type 2. We were shattered. ‘How will we care for a child with such needs? Will our boy even make it home out of this NICU with us?’

As I sit in that room, tears ran down my face. One of the neonatologists grabbed my hand and said, ‘Angela, I need you to know nothing you did caused any of this.’ What a kind and loving team of doctors we had, but guilt overcame me. The fear of Azariah dying was a reality I could not handle. They were saying our boy was born incomplete. They wanted to send us home on palliative care for Azariah.

I went back to see my boy and I looked at my son, who, for the first time, looked awake. He was looking around! ‘You are not incomplete my Azariah, you are perfect, you are mine and we are going to fight.’ From that day on, I was prepared to fight with and for my son. I would make sure he had the best doctors and I would keep him safe. After 32 days in the NICU, we were finally able to bring our boy home with his NG feeding tube. We were taught how to change and place the feeding tube, along with a heart monitor he had to stay hooked up to ‪‪24/7‬‬.

My son deserved to know what love feels like because all he has known since he was born is pain and suffering. The innocence of a child, a baby who is not supposed to know what pain and suffering are, was taken from Azariah. He may have been ‘broken’ in medical terms but he was not hidden nor forgotten by me or the God who created him. Hope is one of the many things he has taught us.

Our tag line for Azariah is #hopeliveshere. Hope is just that–no trial, pain, illness or brokenness can destroy it. For many many months of Azariah’s life at home, he barely left my arms. I wanted to redeem the time I was unable to hold him, feed him, console him. From that day on, I made it my priority to protect Azariah, make sure he knew how insanely loved he was, keep him safe and help him grow in every way possible.

Rocky Health Journey

Weekly therapies started quickly. On top of all of these therapies and so many ongoing doctor appointments, life was nonstop. But our son was alive and at home, and that is what mattered. We did not know if Azariah would ever crawl, walk, eat without a feeding tube or talk, but we put every therapy in place to help him. We found strength in prayer and the promise ‘God works all things for good, for those that love Him.’ We had a one-track mindset: smother him with love, keep him healthy, get him all the intervention he needs. At 8 months old, Azariah received hearing aids.

His world had opened up to him and we were so grateful for this gift to help our boy hear, even just a little bit! That is when we were able to remove Azariah’s feeding tube because he was finally able to eat all of his food by mouth! A year passed. Two years went by. Azariah started to defy the odds against him! He started to army crawl, bat at toys, grab toys, sit up unassisted! He was a miracle in every sense of the word.

Around 2 years of age, while I was rocking Azariah to sleep for his nap, things drastically changed. He went stiff in my arms. I tried to get his attention but he was unresponsive. I turned the light on and saw he started to convulse and foam at the mouth. I ran downstairs and called 911. By now, he had been seizing for over 2 minutes. Two more minutes went by and he started turning blue. I lay him down and gave him three breaths. He stopped foaming at the mouth and finally came around. The paramedics came and we quickly rushed him to the hospital. Our boy had a 4-minute seizure. From then on, we all wondered was this the start of what microcephaly would do to our son? Azariah went on to have two more seizures in the months following his first. With Azariah’s medical complexities, we are unsure of the cause of the seizures.

Courtesy of Angela Smilovici
Courtesy of Angela Smilovici

Azariah turned 3 years old and we knew that what was best for him was to have him attend a special needs preschool where he would receive all of his therapies. I can’t begin to explain the pain and fear I had as his mother, putting him in someone else’s care. With Azariah’s medical complexities and all the precautions we needed to take, every fear went through my head. How could this school keep my boy safe? How could they make sure he feels loved? What if Azariah had a seizure or went into cardiac arrest while at school away from me? I did not want to give my son away. I quickly learned the team Azariah had at school was there to keep him safe and help him thrive. These individuals protect my boy to the fullest, love him unconditionally, and that is where his journey of insane progress began.

Azariah is in his third year at this amazing preschool, where they helped him walk, learn, and now talk! Azariah now has a vocabulary of 50 ‘words’ and sometimes is able to communicate his wants and needs. He is nearly running, although his balance is not good. He is doing it! Azariah is now 5 years old and is thriving. His development is that of a 3-year-old in many ways and in other ways is that of a 1-year-old. Azariah has difficulties eating, walking, talking, and doing daily tasks. He also has many sensory issues. Due to the pain he experienced while he was in the NICU, along with being touched, poked, and prodded by so many doctors and nurses the first two years of his life, he has an extreme fear of doctors and anything new. He needs ‪‪24/7‬‬ monitoring.

Courtesy of Angela Smilovici

Celebrating The Positive

We don’t focus on the things Azariah cannot do, but we focus on and celebrate all he IS doing. Our son is filled with so much love! He loves people and he loves affection! He loves all things music and Mickey. Our life looks very different than most families. We still focus on protecting Azariah and trying to keep him from catching serious illnesses most people are able to fight without serious consequences. However, because of his heart condition, we must always be mindful of trying to keep him healthy.

Azariah will one day need a defibrillator placed into his heart to protect his heart even more. Our precious boy will LIVE with these chromosome deletions that have caused intellectual disabilities, prolonged QT Syndrome, microcephaly, eye and kidney abnormalities, and hearing loss for the rest of his life. We don’t know what his future holds. We don’t know what struggles will look like as he gets older.

However, we want those around him to know different is beautiful. Communication comes in so many other forms other than verbal words. Communication can be touch, eye contact, a smile. Be open, be accepting, be inclusive. Protect those who have no voice. Speak up for those who do not have a voice. Take time to get to know those that are ‘different’ around you and you will see how much children like Azariah will touch your life. Love what matters.”

Courtesy of Angela Smilovici

This story was submitted to Love What Matters by Angela Smilovici of Chicago, Illinois. You can follow her journey on Instagram and Facebook. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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