Fund appeal for life saving surgery for baby girl Hania

A FAMILY have launched an appeal to raise €1.7m which will provide potentially lifesaving surgery, for their 18-month-old daughter, in the United States.

Time is of the essence, as the longer Hania Aziz Ahmad goes without undergoing life-changing surgery to address her congenital heart defect, the bigger the risk it poses to her life.

Hania was born with a complex rare congenital heart defect called Pulmonary Atresia with a ventricular septal defect (VSD) and major aortopulmonary collateral arteries (MAPCAs).

Pulmonary atresia is a birth defect of the heart where the valve that controls blood flow from the heart to the lungs does not function, and her skin appears blue due to her low oxygen levels.

Difficulties started before Hania was born, with her mother Ainee saying that the pregnancy was difficult and that their “world came crashing down” when she was diagnosed with the complex heart defect shortly after birth.

At just three months old, Hania underwent her first open heart surgery in Children’s Health Ireland (CHI) at Crumlin to increase blood flow and help the pulmonary arteries grow.

Afterwards, her family waited for her pulmonary arteries to grow in order to carry out another palliative procedure, and Hania returned home to Saggart dependent on a nasogastric tube.

“Hania’s development did not happen as we had hoped,” Aziz Ahmad, Hania’s father, tells The Echo.

“We were basically told that we cannot address it here because the expertise does not exist in Ireland.

“We were referred to Stanford and last week they came back to us, there is hope for Hania and they believe that they can do it.”

Doctors in Lucile Packard Children’s Hospital in Stanford, California, held a conference to discuss the possibility of fixing Hania’s little heart.

On March 15, Dr Frank L Hanley and Dr Stafford Grady wrote a letter with an outline plan and the prognosis could be better than expected.

“We would estimate a 50 per cent chance of being able to completely repair, with a fallback position of unifocalizing to a single shunt for a period of time, with recatheterization six months later to assess PA pressure, resistance and growth,” the letter reads.

The team are willing to operate and complete a total reconstruction of Hania’s heart, and her family say it is the only option in “giving her any chance of life”.

However, the operation comes at a massive cost.

The cost, including pre-operation services, cardiac catheterisation, surgery, and a second cardiac catheterisation six months after the initial surgery, is coming in at $1,787,500.

This cost estimate outlines that “final charges may be higher if complications occur” and that it does not cover prescription medication costs, additional services and follow ups.

Watching Hania’s development everyday with the uphill task of raising such funds is difficult for the family.

“She’s pretty jolly,” Aziz says.

“Hania appears very normal cognitively. She can speak a lot of words, maybe she can’t necessarily make a sentence but she can speak, and picks things up very quickly.

“Physically, she is a bit smaller compared to other kids and her skin is a bit blueish because her blood oxygen level is lower.

“Daily, she will do something very interesting and we’ll be surprised at how far ahead she seems, even to how our son was at this age.

“We’ll be thinking this is very good, but then it is followed by gloom because we are wondering what will happen next.

“There is a risk that as Hania grows, her cognitive development will be affected.

“This is because as her body grows, it puts extra pressure on her organs, and they can start to fail because oxygen is not available to them.

“We know that it is a gradual fall and the more the procedure is delayed, the more organs will be affected before her lungs eventually collapse, which will put more pressure on her heart.

“Hania can have a good life if this is corrected, but the longer we wait, we know that some of the losses that she could experience would be irreversible.

“Ultimately, without surgery, she will have a very limited life and the risks are obviously, the loss of life.”

At the moment, the family are waiting to hear back from Stanford with a timeline, but have launched a fundraiser in the meantime to try foot the enormous bill – which they cannot afford.

For more information and to donate to the ‘Fix Hania’s Little Heart’ appeal, visit: HERE.