Help fix Hania’s little heart, help save her life!

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. After 5 years of trying to conceive baby number 2, I fell pregnant with my daughter Hania. She is currently 28 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+ 5days 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 that controls blood flow from the heart to the lungs does not form at all. This means that deoxygenated blood cannot get from the right ventricle into the lungs. Hania’s pulmonary arteries are also underdeveloped (like little threads). 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.

After 12 worrying months came that heart-wrenching moment, when her consultant told us the dreaded news “ 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”. 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 to some specialist hospitals in the UK for second opinions. Again, we waited in anticipation. Then after another few agonizing months, we 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. 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. This means they have a wealth of experience treating complex heart conditions in babies compared to anywhere else. We have to raise the funds to travel to the USA and pay for all of Hania’s medical treatments. 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.

Update (22 Dec 2023):

As the fee required for the treatment in Stanford was extremely high we started looking for other options in Europe. After extensive search, evaluation and availability constraints of the relevant surgeons we identified a team in Keplar University Hospital at Linz, Austria.

The surgical treatment the doctors advised was to be completed in multiple sessions meaning Hania will be operated with an open heart surgery on each occassion. The following 3 stages are envisaged at this stage:

1. Placement of Right Ventricular Conduit and Unifocalisation of the MAPCAs. This step is completed in October 2023

2. The Left Pulmonary Artery is hypoplastic (tiny and not growing) and requires surgical reconstruction. This surgery will be performed on 2 February 2024.

3. Closure of the Ventral Septal Defect (hole between the two heart chambers). This surgery will be performed around 6-8months later.

The costs of surgery 1 were approximately €80,000 and have already been paid from the fund raising and personal resources.

The estimated costs for the 2nd surgery is €60,000

The third surgery is also expected to have costs around 50,000 to 60,000. These will be confirmed when the surgery is booked and is subject to the success of the first two stages.