A mother has created a GoFundMe page to help raise money to save her daughter’s life after she noticed a change in her skin which ended up being a life-threatening birth defect.
Ainee wrote a detailed description of what has been happening in their lives and why they need to raise funds urgently to help with her daughter's treatment.
She opened her post by writing: “My name is Ainee (Qurat ull Ain) and I am raising funds to save my daughter's life. Hania has a rare congenital heart defect called Pulmonary Atresia with VSD and MAPCAs”.
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She went on to explain: “After 5 years of trying to conceive baby number 2, I fell pregnant with my daughter Hania. She is currently 19 months old.
“The pregnancy was difficult from the start but our world came crashing down when we discovered that our daughter would be born with a complex congenital heart defect. I was admitted to the hospital at 30 weeks with pre-eclampsia and at 35 weeks and 5 days my daughter was born.
“She weighed 1.8kg (less than 2kg). I remember looking at her and noticing a blue tinge on her skin. The medical team took her immediately to Intensive Care at Crumlin Children’s Hospital, Dublin to perform a number of tests – later that day the team discovered 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.
“Hania’s pulmonary arteries are also underdeveloped (like little threads),” her mother explained.
“At just 3 months old Hania underwent her first open heart surgery at Crumlin Children’s Hospital, Dublin. A MEE Shunt (cutting the underdeveloped from 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”.
She said that after 12 ‘worrying months,’ they were then faced with the heart-wrenching moment when her consultant told Ainee and her family: “ I am sorry Hania’s arteries have not managed to grow to a good enough size. We will not be able to carry out the surgery, it is too risky! Unfortunately, there is nothing more we can do for your daughter here in Dublin, I am so sorry”.
Her mum then 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”.
A referral was made for Hania to be seen by some specialist hospitals in the UK for second opinions.
They said they waited in anticipation and after another few ‘agonizing months,’ they received more bad news – “the only place that Hania could be treated would be Stanford University, California USA by a specialist surgeon called Professor Hanley”.
She explained: “He is willing to operate, meaning a total reconstruction of our daughter’s heart. This is the only option we have of giving her any chance of life, we dream for her bigger brother being able to hold on to his little sister for some more precious years. We will not give up on her!”
Stanford Medicine Children’s Health is home to one of the leading paediatric heart centres in the World, which means they have a huge wealth of experience in treating complex heart conditions in babies.
“We have to raise the funds to travel to the USA and pay for all of Hania’s medical treatments,” Ainee said.
“We live in Dublin and most of our family resides in Pakistan. We are relying on this GoFundMe page to raise much-needed funds for our daughter which will exceed USD 1.7 million
“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”.
If you would like to donate money for baby Hania, you can visit the GoFundMe page here.
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