Running Race for the Kids in memory of Mateo

The morning after Mateo was born, Monica noticed his hands and feet were slightly blue. After being checked over, he was taken to the intensive care unit at the hospital where he was born. Doctors discovered he was born with a rare structural defect known as horseshoe lung, which is where the bases of the right and left lung are fused together. 

“Mateo’s lungs were very developed on one side, very minimal on the other one – with hypoplasia of the left lung,” Monica says. They also found he had a heart defect known as anomalous pulmonary venous connection, and a hole between the chambers of the heart.

Mateo was transferred to GOSH later that day, where further tests were carried out. “They told us that he was in a very poor condition,” Monica says.

“We were completely overwhelmed when we first got the diagnosis. You’re thinking ‘I had a healthy baby 24 hours ago; how can it be that now he’s so poorly? It was such a rare case.

"The care from everyone was fantastic. Whenever we had questions, they were there to explain it to us. They brought us a model of the heart to explain what was wrong with Mateo, to really help us understand what his condition was."

A few days after arriving at GOSH, Monica and Alberto learned that it was unlikely Mateo would be fit enough to have surgery.

"It was very difficult to process,” Monica says. “The staff set up a little room in the ICU in the isolation part, so we could stay together the three of us. They were extremely conscious of the situation and adjusted things for us.

“Everyone was trying to make it as nice as possible, with having his hands printed, coming to offer us drinks and anything we needed.”

After around two weeks, Monica and Alberto took Mateo home. A member of the Palliative care team visited them daily, and they also continued to check-in with doctors at GOSH.

“We spent almost four weeks at home with Mateo, getting to know each other a little bit better, enjoying those moments as first-time parents,” Monica says.

“We were trying to just enjoy playing some music to him, singing to him, holding and cuddling him a lot, taking him on walks to Hampsted Heath – which is a very special place for us.

“It was such an important time to make memories with Mateo. He even did his first few smiles while he was at home, it was such a special and precious time.”

Sadly, when he was six weeks old, Mateo passed away at home.

“Mateo was a beautiful boy, with very big dark eyes,” Monica says. “I would say he was very curious; he had his eyes open a lot and was always looking around.

"He was of a warm and calm nature, there are some faces that just transmit calmness and that’s how we felt when looking at him, he transmitted that to us. He had such a cheeky little smile. He was just a beautiful boy.”

This October, Mateo would have turned 15.

“Every year we mark the time when Mateo was born and when he died,” Monica says. “It’s so important to us to keep Mateo’s memory alive, you don’t want your child to be forgotten. He’s our child, we have four children, even though he isn’t with us anymore he will always be part of us.

"When we moved to Vienna, our children were asked ‘how many siblings do you have?’ and they would say ‘I have three, one is not with us anymore and I have two others’. They all have him very present in their lives even though they never met him.” 

On Saturday 12 October, Monica, Alberto and their three sons, Cosme, Telmo and Bruno, will be taking part in our family fun run RBC Race for the Kids in Mateo’s memory.

“The experience of running surrounded by families treated at GOSH and raising funds for the hospital brings us a lot of happiness. We feel closer to Mateo and to Great Ormond Street Hospital.

"We call London our hometown. It’s where all our four boys were born and it’s where we scattered Mateo’s ashes, so London is where he is and where his spirit is. We will be running this fantastic race together in his memory and raising funds for GOSH Charity."