‘What does a baby’s heart look like at 18 weeks?’ I knew something was wrong. But Tad’s father continued to say, ‘Don’t worry until we have to.’ So I tried my best not to.’

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“What started as a typical ‘surprise’ pregnancy, quickly began the turning point in the life we once knew. Early on in the pregnancy I did everything I could do to have a healthy pregnancy. I myself was healthy, I took prenatal vitamins the moment I found out when I was about 6 weeks along, I would even weekly research what foods were best for the baby’s development at that gestation. I was on a mission to try to control and create a healthy, beautiful baby. But in a matter of two minutes when the fetal maternal doctor came into the room to share their findings with us, none of that mattered anymore. And I quickly lost control of everything in my life as I knew it.

Pregnant woman stands on beach with sunset in background
Courtesy of Micheleen Clancy

We had the most anticipated appointment, the anatomy scan, scheduled a little early at about 18 weeks. We were so excited to finally confirm the gender. As my OB every appointment before had stated, he obviously appeared to be a baby boy. But what started off as an exciting appointment ended in more questions than answers. My OB stated he was in fact a boy, but wanted to see me back in two weeks because he said, ‘he is sitting Buddha style facing away from me, so he could not get a good look at his heart.’ I remember watching him scan the heart, go on to confirm the gender, check fingers and toes, but yet kept going back and scanning his heart over and over again. He told us ‘not to worry, at this gestation everything was still so tiny.’ But I left that appointment, worried, and concerned. I left that appointment wanting to share the great news of, ‘we’re having a baby boy,’ but it was a double-edged sword of, but something might be wrong with his heart.

What if something is wrong with his heart? Then what? So I did what everyone continued to tell me not to do, and turned to google. I googled, ‘what does a baby’s heart look like at 18 weeks?’ And after seeing a few I knew something was wrong. But Tyler, Tad’s father, continued to say, ‘don’t worry until we have to.’ So I tried my best not to.

Husband lays asleep beside wife with his hand on her pregnant stomach
Courtesy of Micheleen Clancy

We went back to my OB two weeks later for him to confirm there was in fact something wrong with his heart, which he said appeared to be HLHS. Because I had just googled what the baby’s heart should look like, I clearly saw, my babies heart did not look like it should. One side was severely under developed. I remember laying on that table, looking at the wooden walls, feeling like life itself was just taken from me. He tried his best to reassure us there were options, but told us we need to see a high risk doctor as this was not his area of specialty. I vividly remember walking out of the office in a complete fog, Tyler had to return to work and I had errands to run. I cried so hard I couldn’t tell if the fogginess was from all my crying or if the weather was really that bad. I bawled in front of the post office for at least 30 minutes before I could compose myself enough to fight off the tears streaming down my face. I felt so disconnected from the world. No one knew my swollen eyes, red face and my tear-stained cheeks were from just being told my unborn baby had a something wrong with his heart.

From that appointment we were told the office was contacting a fetal maternal doctor and I would need a fetal echo to confirm the heart defect. Their schedule was booked, and the earliest they could get us was in 2-3 weeks. I scheduled the soonest appointment. Which took forever to come, but during that time we gained confidence that there were options. HLHS was a severe heart defect, but there were surgeries. I took to social media and found the sweetest babies who were currently fighting that battle and doing great. We went into that appointment positive. And yet the carpet was ripped right out from us again – the echo tech started off very sweet and chatting. Soon her words stopped, and my tears started again. I knew it was not good. She told us she got all the scans and the doctor would be right in to talk to us. In walked the doctor and seconds later the words came out: ‘Your baby has a heart defect called Hypoplastic Left Heart Syndrome… and he has a cleft lip and palate, which makes us think he has a form of trisomy that is not compatible for life.’

Pregnant woman sits in doctor's office where she heard her baby has Hypoplastic Left Heart Syndrome
Courtesy of Micheleen Clancy

Those words came out of his mouth effortlessly. Yet I felt as if I had just gotten into the worst car accident possible. I slowly watched everything around me shatter into pieces. Before my mind could even process those words, he asked, ‘do you want to terminate?’ Tyler and I immediately looked at each other and mutually agreed that was not an option for us. With our decision, the doctor recommended to get an amnio to confirm if it was a trisomy defect to help plan for our delivery options. My whole body was shaking uncontrollably as we gathered ourselves before walking out. When we reached our car, I quickly called my Aunt trying to explain what just happened in between my sobs, as Tyler called his parents and broke the news about the unfortunate findings of their unborn grandson. From there we scheduled the amnio and patiently waited for the results, not knowing if we were planning a life for the three – or two – of us. After a relieving phone call stating the amnio came back clear, we planned and prepared for his heart surgeries.

After hours of researching we found a heart surgeon and drove over 12 hours to meet him and instantly knew he was the one. Then gathered our lives to temporarily move for his delivery and first two open heart surgeries within the first six months of his life.

We arrived on a Monday, when I was ending my 35th week of pregnancy, and after reestablishing care down here and getting another diagnosis of IUGR (Intrauterine Growth Restriction), our baby boy Tad decided to arrive the following Sunday. The OR team was prepared to deliver a very sick heart baby, and they prepared me too. Stating that I could quickly see him, if he was stable enough. At 8:14 p.m. on Sunday night, Theodore was delivered by C-section. He arrived into this world screaming before he was even fully delivered, letting us know he was tiny, weighing only 4 pounds, but strong! And he was ready for this fight. I got a quick peek of him before his cord was cut and he was whisked away to the NICU where his Cardiologist was waiting.

Intubated baby with Hypoplastic Left Heart Syndrome lays on back in NICU
Courtesy of Micheleen Clancy
Baby with Hypoplastic Left Heart Syndrome holds mothers finger
Courtesy of Micheleen Clancy

He received a 9/9 on his newborn screening, so he was cleared to be immediately transferred down the street to the Children’s Hospital where he would be taken care of. It would be the hospital where he would spend the first 7 months of his life – where he had many surgeries and procedures, and starting at only 3 days old, he had his first open heart surgery.

Mother sits smiling in chair holding baby with Hypoplastic Left Heart Syndrome while husband stands smiling behind her
Courtesy of Micheleen Clancy
Newborn with Hypoplastic Left Heart Syndrome and cleft palate lays in NICU holding father's finger
Courtesy of Micheleen Clancy

He then went into cardiac arrest at 1 month old. Had a trach and g-tube placed when he was only 3 months old due to multiple failed extubations. Then he went into his second open heart surgery very sick when he was only 4 months old and came out on bypass with more machines and pumps than you could count. But he continued to fight, proving his strength and desire to be here with us.

Intubated newborn lays on back in NICU after open heart surgery
Courtesy of Micheleen Clancy

He slowly but surely recovered and was removed from bypass after 3 long days. Then was taken back to the OR not even two weeks later to have a Pacemaker inserted due to an irregular heartbeat. He then fought off infection after infection, set back after set back. But the glorious, yet surreal day came when they finally allowed us to take our warrior home!

Baby boy lays on back after open heart surgery and cleft lip and palate surgery
Courtesy of Micheleen Clancy
Baby boy who had open heart and cleft palate surgery lays smiling on back in NICU
Courtesy of Micheleen Clancy
Baby with trach lays on back in NICU holding green stuffed animal
Courtesy of Micheleen Clancy

Taking a heart baby home can be very intimidating on its own, but our sweet baby also came home with a trach, ventilator, continuous oxygen and more machines and wires than the both of us could carry. But he came home. And once Tad came home, he quickly let us know how much he loved being home. Yes, we were admitted about once a month for the first 6 months. But we were home. Tad was growing and he was such a happy little baby, and that was all that mattered.

Mother looks down at baby boy with cleft palate as husband looks over at son smiling
Courtesy of Micheleen Clancy
Baby with feeding tube and cleft palate smiles as he sits in stroller
Courtesy of Micheleen Clancy

Now Tad is an extremely happy, silly and chunky 15-month-old with the sweetest personality, who has come to exceed not only our expectations, but all of his team’s at the hospital. He went from being completely vent-dependent to only using the vent for one to two hours a night, if that! He just had his beautiful cleft lip repaired and will be having a cardiac cath within the month to plan for his fourth open heart surgery.

Baby boy with trach and cleft palate sits in hospital bed smiling
Courtesy of Micheleen Clancy
Baby lays on back with trach after cleft palate surgery
Courtesy of Micheleen Clancy

Tad still has at least two more heart surgeries, along with other procedures such as swallow studies, hearing tests, bronchoscopes, etc. but we believe in his fight. I would be lying if I said this is the life I always imagined to have, but I would not change one thing. Yes Tad has not had the most ideal first year of life, but this is the life he was destined for. He was created for this battle, and I was created to be his mother for this journey of ours.”

Baby boy with cleft palate and lip smiles as he sits on mothers lap
Courtesy of Micheleen Clancy

This story was submitted to Love What Matters by Micheleen Clancy of Miami, Florida. You can follow their journey on InstagramDo you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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