We're taking part in Superhero Walk 2026 to raise vital donations for our region's heart unit and the patients and families who rely on it!

Our story...

Our daughter was born early, on 29th October 2025, weighing only 990grams due to a placenta problem which caused her to be growth restricted. Antenatally we also found out she had a heart defect (CHD), hypoplastic aortic arch and coarctation of the aorta. However it was uncertain whether we would be going down a Left hypoplastic heart(LHLS) route due to the size of her left side. This would only be known once she arrived. I lived in constant fear, stress and doubt throughout the remainder of my pregnancy after the 20 week scan. They offered us a termination but I just had that mum intuition and doubt about the possibility of LHLS.

I went on to have 3 amniocentesis procedures to see if she had a chromosomal or genetic disorder. All came back negative.

I developed pre eclampsia, my blood pressure was high, to the point they said I may have a stroke. I had no choice but to deliver her via c-section. I knew she was still so small.

We had a fetal MRI hours before my C-section, which was useless, offered no information, vague and what turned out to be somewhat inaccurate.

One final scan by Fetal medicine before she was delivered where they told us that she could be born sleeping or only live a few days. But she survived…. And proved all the odds, scans and reports against her wrong.

We spent four months on the Leeds neonatal unit waiting for her to grow to be the size needed for her open heart surgery. It was a long, painful, stressful time due to her being so small and needed to be a certain weight for the surgery to be performed safely.

During the 4 month period we never left the hospital or went home, luckily we received accommodation at Eckersley house, thanks to the CHSF. Without them and Eckersley house I don’t think we could have survived, physically and mentally.

She had two cardiac arrests during the four month period and unfortunately on Christmas Day she required intubation & heavy sedation for 14 days due to acquiring a respiratory infection and she was struggling due to her coarctation and narrow aortic arch.

The gaining weight was an extremely slow process due to her cardiac condition. It was like fighting an uphill battle everyday.

She finally underwent her 9 hour open heart surgery in February 2026, which was successful and we eventually went home in March 2026.

She is a very happy, content and now healthy baby. We can’t thank the Leeds NICU, L51 staff, DR Jaber enough for saving our little girl. Therefore we would love to raise donations for the CHSF to help families like ours who have a child born with a CHD. We couldn’t have done it without them.