'My baby girl was diagnosed with a rare heart defect…

'My baby girl was diagnosed with a rare heart defect after her skin turned blue'

A heartbroken mum has revealed how her baby girl got diagnosed with a life-threatening heart defect after her skin turned blue.

Dublin mum-of-two Ainee has appealed for donations for help with getting her beloved daughter, Hania, life-saving treatment for her potentially fatal condition. Hania, who is just over a year and a half, was diagnosed with a rare congenital heart defect called Pulmonary Atresia with VSD and MAPCAs.

Ainee revealed Hania was conceived after five years of trying and the pregnancy was difficult from the start. She said: "I was admitted to the hospital at 30 weeks with pre-eclampsia and at 35 weeks and 5 days my daughter was born."

When Hania was born, she weighed less than 2kg and Ainee noticed a blue tinge on her skin. Hania was immediately taken to intensive care at Crumlin Children’s Hospital. A number of tests revealed a murmur and identified the heart condition as a critical Congenital Heart Disease called "Pulmonary Atresia with VSD and MAPCAs".

Pulmonary Atresia is a birth defect of the heart where the valve controlling blood flow from the heart to the lungs does not form. This results in deoxygenated blood not getting from the right ventricle into the lungs.

Speaking on the GoFuneMe page, Ainee continued: "At just 3 months old Hania underwent her first open heart surgery at Crumlin Children’s Hospital, Dublin. An MEE Shunt (cutting the underdeveloped from the heart and attaching to the aorta) was fitted in the hope that increased blood flow would make the Pulmonary arteries grow.

“We then faced the dreaded months ahead waiting, hoping, and praying that they would grow to a good enough size so that the surgeon could perform a Unifocalization procedure (partial repair). Hania returned home NG tube dependent and we waited anxiously for Hania to grow a bit bigger."

After 12 months of "worrying" the consultant told the family that they won't be able to carry out surgery as Hania's arteries hadn't grown to a good enough size. Ainee said: "My body felt numb, it was like a dark cloud had engulfed me, I sat staring down at Hania as she sat on my knee, my heart ached."

Hania was referred to some specialist hospitals in the UK for second opinions and months later the family received more bad news. Ainee said: "The only place that Hania could be treated would be Stanford University, California, USA by a specialist surgeon called Professor Hanley."

Now Ainee and her family are desperately trying to raise €1.7 million to pay for Hania's treatment. Ainee added: "This is the only chance we have and time is running out. We appreciate in advance every single person who donates and takes the time to share our story.

"We are not prepared to give up the fight for our precious warrior, we need your help in assisting us in reaching our goal! A little amount will go a long way in Hania’s fight for survival."

You can donate here to help pay for Hania's treatment.

Read next:

Sign up to the Dublin Live Newsletter to get all the latest Dublin news straight to your inbox.

Read news from 100’s of titles, curated specifically for you.

Already a member? Sign in here