Appeal launched to help baby Madison who was born with a rare heart defect

The parents of a seriously-ill three-month-old girl born with a rare heart defect have launched a fundraising appeal to help them buy a special cot, chair and other equipment.

Friday, 16th September 2016, 8:00 am
Updated Wednesday, 5th October 2016, 2:41 pm
Madison Parry was born with a serious heart defect EMN-160914-162840001

Madison Parry was born by caesarean section on June 11 at Peterborough City Hospital and, after undergoing a series of tests, was taken to Great Ormond Street Hospital in London the following day. She has remained there ever since.

Her parents Felicity and Simon Parry, who currently live in Wood View, Bourne, first knew there was a problem when Felicity had a 20-week scan and it was noticed that Madison’s heart was not functioning correctly.

Specialists at Great Ormond Street Hospital later diagnosed hypoplastic left heart syndrome (HLHS) – a condition where the left lower pumping chamber (left ventricle) of the heart does not develop properly and the main blood vessel that carries blood from the heart to the rest of the body (the aorta) is smaller than usual. This means that the heart is unable to pump blood around the body effectively.

Sign up to our daily newsletter

The i newsletter cut through the noise

Felicity said: “We were given three options: a termination; carrying on with the pregnancy but allowing her to die after birth by not intervening; or operating straight away.

“We were both determined to do everything possible for Madison. We knew the situation was very serious, but we had made our decision.”

Madison has since undergone major operations on her heart and aorta and will need further surgery in the near future.

Felicity added: “Madison has the rarest heart condition you can have.

“The surgery is palliative and will not cure the problems she has but should make her more comfortable and help her survive a bit longer.

“There are very few adults living with HLHS. We don’t know what is around the corner for Madison.

“The surgery she still requires is dangerous, and some children don’t make it home, but we are staying as positive as we can.”

Felicity, 27, and Simon, 29, have two other children, Jacob, 5, who suffers from autism, and Amelia, 4.

Simon has had to give up his job at a tyre firm in Bourne to look after them while 
Felicity is in London with Madison.

The family is hoping to be able to move to a bigger house in Market Deeping which will better suit their needs.

Doctors at Great Ormond Street Hospital have discovered Madison is also suffering from vocal palsy and laryngomalacia – which make swallowing impossible. She is waiting for a feeding tube to be fitted into her stomach.

The Parry family are hoping to raise £8,000 to buy the equipment they need for Madison. To donate, visit

They also planning fundraising activities for Peterborough-based charity Little Miracles, which has been supporting the family.