Hear Rebekah and Gianni's story from early diagnosis of congenital heart disease up to now.
Every Little Heart Matters is ISUOG's global awareness campaign, raising awareness of congenital heart disease amongst our community, and beyond. An essential part of this awareness is sharing the lived-experiences of patients and parents of babies living with congenital heart defects, as these stories help to uncover the real picture of both the psychological and physical burden on patients and their loved-ones.
It was early in the first trimester that Rebekah Mascari, mother to 11-month-old Gianni, found out that her baby's heart was not developing as it should.
"It just killed us because we did not know that it was something survivable."
Rebekah, from Florida, USA, was aware that having a child with a heart defect was a likely possibility, after witnessing the loss of her brother's first child to a heart complication. So the news she and her husband Damon received during their second scan of Gianni was terrifying for them both.
She said: "Dr Abu-Rustum noticed right away. She could see that the heart was not developing and it just killed us because we did not know that it was something survivable, something curable in a sense, something manageable. So it was really difficult looking at another loss so early on."
Rebekah and Damon experienced the loss of an earlier pregnancy to anencephaly, just before they conceived Gianni, which made this news all the more difficult to receive.
"It prepares you for the hardship."
What the couple didn't realise is that early detection of heart defects is what is most crucial to having a healthy pregnancy and saving the life of the new-born. With regular ultrasound scans, the doctors were able to monitor Gianni closely and mentally prepare Rebekah for what was going to be quite a different birth to what she had with her first-born daughter, over ten years ago. The expectant parents were filled with confidence and trust in the team at the University Hospital Florida, as they reassured Rebekah that she would be able to see the pregnancy through.
"If it wasn't for the ultrasound, I think they would have just been shocked, especially if he had been born at home, if we had just gone that way, it would have been terrible, because he needed intervention pretty quickly after delivery", said Rebekah.
She continued to elaborate: "It prepares you emotionally for what's going to happen the rest of his life. We spoke to so many surgeons and cardiologists throughout the pregnancy on what the first surgery is going to look like and survival rates, what he's going to look like down the road growing up. So, it just prepares you for that hardship.
"It was very difficult to think about if we wanted to put him through all the things he is going to have to go through, so it was hard because we never thought we would have to weigh those options."
The news was deeply felt by members of Rebekah and Damon's family, particularly Rebekah's brother.
"He was probably having flashbacks to his wife delivering and the surgery and he [the baby] did not come back after surgery."
Considering that Gianni would be the first and only grandchild of Damon's parents, that Rebekah's mum lives with cardiac problems, and her brother was reminded of the loss of his first child, the diagnosis was initially a very anxious time for them all.
"You don't think in your twenties that you should get all these routine [scans], you think 'I'm young and I'm healthy'. He was probably having flashbacks to his wife delivering and the surgery and he [the baby] did not come back after surgery", said Rebekah.
When Gianni was born, Rebekah had the support of lots of family members in the delivery room, and she and Damon were able to hold him for 30 to 40 minutes before Damon followed him off to the NICU.
"Then they took him away and that was hard."
Rebekah casts her mind back to the moment Gianni was delivered safely; she said: "They let us hold him and then he cried, and he looked at us and then they took him away and that was hard."
Gianni had first open-heart surgery a week after his birth and had his second at around six months. He will be due to have the third one when he is around four years old.
"We just actually came back from the cardiologist today and we're doing great and healthy and perfect", said Rebekah.
Rebekah reflected on the socio-economic disparities of prenatal care. She recalled her experience of her first pregnancy: "I didn't have a job yet so I did go through the health department, and they were just like in and out, in and out and nobody really paid attention."
Ultrasound's ability to detect heart defects so early on has given Rebekah reassurance and hope for Gianni's future; she said:
"I really think in his lifetime there's going to be advancements far beyond what we can conceive now, just because we know so much sooner."
Thank you Rebekah, Damon and Gianni, for sharing your story with us.