Saturday, September 29, 2018

World Heart Day: 'My daughter was 10 days old when she had an open heart surgery'

Today is the World Health Organisation World Heart Day. This landmark day is a poignant reminder to many families of survival, courage and love. Such families include Marisa and Ian Mercieca Bons.

Marisa's story begins six years ago, heavily expectant with twins she was admitted to Mater Dei Hospital for a planned cesarean. There were no signs during the pregnancy that anything was awry, in-fact the family had further scans than a typical expectant mother due to the nature of carrying twins- yet all was deemed fine.

Less than 24 hours after birth, Marisa began to notice her daughter Emma was not as responsive as her brother Zack. Emma had difficulty feeding; she appeared drowsy and less alert. "Call it mother's instinct or what you will, but I knew, I knew something wasn't right with Emma, the midwives didn't seem overly concerned at the time. However a young midwife (a student at the time) went to get a doctor and as soon as she examined her they ran with Emma to the NPICU. From then on everything was a blur''. 

This moment marked the start of a surreal journey very few of us can even begin to imagine. During the following hours, Emma was transferred to an incubator, tests were run, blood tests were ordered, and scans were administered.  Fearing the worst the new parents anxiously awaited updates.

"Later that evening Child Specialist Professor Victor Grech came to visit us, and he told us that Emma had to go to London immediately for heart surgery. Her heart wasn't fully developed and the specialized surgery she needed couldn't be performed at Mater Dei'' added Ian.

Emma was born with Univentricular heart condition, a serious heart defect.  Apart from the endless paperwork, arranging a passport for Emma and booking Ian's flights, another heartbreaking part for the family was leaving Emma's twin baby brother Zack behind. Recovering herself from major surgery and barely able to walk, nurses advised Marisa that it is difficult to travel and bed rest is best following the cesarean. Due to the severity of Emma's critical condition, Marisa decided to travel to London just four days after the C section.

At Great Ormond Street Hospital in London, the medical team decided to wait a few days until baby Emma was of sufficient weight and strong enough to withstand a chance of surviving the open heart surgery. Her fate remained in the hands of the surgeons as she was taken for surgery. ''I couldn't sleep, I couldn't eat, I couldn't do anything, I was dreading a call from the hospital to say she hadn't made it,'' lamented Marisa. Fortunately for the family, that awful call never came.

Although the surgery was a success, complications developed and Emma had to be operated again just after 24 hours of the first surgery, after which Emma became stronger and stronger, remarkably beating the odds stacked against her tiny body. In the next months, Emma was to endure a further two heart surgeries in London, to replace the temporary shunt with permanent ones to accommodate the size of her growing heart, Several weeks later upon their return in Malta, Marisa then had to take time to bond with her son, a son she didn't yet properly know after her absence.

''My mother put him in my arms as I walked through the door,  it felt so strange, it took a couple of hours to reestablish my connection with Zack.'' Positively Marisa was able to pick up her relationship with Zack though understandably admits feeling very concerned and protective about any signs of illness in the twins.

Emma was scheduled for another surgery at ten months, as she was so vulnerable it was imperative that she wouldn't get sick in the meantime since nothing could be done here in Malta. Marisa remained at home in isolation with her twins, unable to let the closest of friends visit until Emma had grown strong enough for her second surgery. In what should have been a joyous time with the arrival of twins, the couple found their lives back in Malta, isolated and revolving around medical appointments.

It was during this time Marisa and Ian found support from Katrina Aquilina, founder of the Beating Hearts Malta, an NGO set up to guide and support parents of children born with congenital heart conditions. Marisa now works closely with the foundation, supporting families who are walking in their shoes.

Emma had her last operation at the age of four and although today, she is a bright, beautiful little girl, bouncing around playfully with her brother Zack as we meet, she still has to cope with living with half a heart for the rest of her life. Thanks to the surgical interventions she's had, she can live a normal life, but with extra care in certain situations. Aside from the scar running neatly down her chest, one would have no idea of the procedures Emma has endured, and the immense ordeal the family have encountered.

Professor Victor Grech is also the Chairperson of Beating Hearts Malta. He has recently launched an exhibition of his personal artworks in aid of the charity. Prof Grech's paintings are landscapes of Malta, they have been exhibited at the Hilton and Westin resort in St Julian's, and the Phoenicia Hotel in Valletta. Simultaneous exhibitions are also being held in Brussels, London and Australia. So far over €18,000 has been raised and the last few paintings are still available to buy.

 



from The Malta Independent https://ift.tt/2zEco1z
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