Teo’s heart condition was detected before he was born, but he tragically passed away when he was one day old. This is his story, told by his parents Matt and Marga:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
The 20th of May 2023 was the happiest day for us. Our beautiful Teo arrived in this world and completed our family. We had thought that moment would never come as the previous months had been plagued with worry and fear. But at 21.5 inches and 7.96 pounds, he looked so healthy and we couldn’t have been prouder of our strong little boy.
The fear started at the 20 week scan, when Teo’s congenital heart defect was detected. Two days later, we had to see a cardiologist. At that point we were told there was some regurgitation in his mitral valve – something mild – so, although worried, we felt relieved and we had extra scans every four weeks to check on his progress.
It was at 28 weeks when another sonographer wasn’t happy with what he saw, and disagreed with it being a mild condition. He referred us to a specialist hospital where, a week later, a group of cardiologists confirmed our worst fears. Time stood still for us the moment they said, “What your baby has is very serious, his heart could stop at any moment.”
Teo had mitral valve insufficiency together with severe aortic stenosis. We were told that he would need some kind of procedure as soon as he was born, however they were not certain if he’d make it to term.
But he did.
We went for extra scans every two weeks, and each time Teo showed that he was gaining weight and his heart condition was stable. The doctors planned to induce labour on the 22nd May, but Teo made an early appearance two days earlier.
As soon as he was born, he was rushed to NICU. When we spoke to the cardiologist later that morning, our bubble of happiness and excitement quickly burst and brought us back to reality. We were reminded of the severity of his heart defect and how risky any procedure was in a newborn baby. They had decided to do a balloon valvuloplasty the following day.
The 21st May is a day we fight hard to forget. There are too many aspects of that day that still make our blood chill: the phone call, the doctors’ faces, the wait, the noises, the fear, the news…News no parent should ever have to hear.
Teo’s balloon valvuloplasty went extremely wrong. There was a perforation and they needed to perform open heart surgery straight away to fix it. But it was too much for his little heart and he died during surgery.
It has now been a year and we are still learning to cope with his loss. We are hurting and so is our daughter, who misses her little brother so much. Some days the pain is unbearable and it feels like torture. We have had support, but we have also felt so lost. We felt isolated because nobody could understand our pain.
Coming across Tiny Tickers was a lifeline for us. Reading other loss stories helped us to understand that we are not alone and that, sadly, other parents have had to endure similar experiences. It is amazing to read successful stories of little heart warriors, but we are also so grateful to Tiny Tickers for giving visibility to those, who like Teo, have been taken too soon.
We are so thankful for all the work Tiny Tickers does in raising awareness for congenital heart disease (CHD). In our case, early detection, despite the outcome of it all, has given us the peace of knowing that from the moment Teo was born, everything was done to ensure his wellbeing.
Teo is in our hearts and our thoughts every second of every day and he always will be.
Tiny Tickers is here for bereaved heart families. Find out how we can support you here.
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