Lucie and Isobel’s new hearts

7 Sep 2020, 11:37 a.m.

Patients Lucie and Isobel with their brother Jude and dog Lula.

This Organ Donation Week 2020, Mum Joanna shares the story of her two daughters, Lucie and Isobel, who both experienced the same rare heart condition seven years apart and were given life-saving heart transplants.

We never imagined that both our daughters would find themselves in the same situation seven years apart, both with dilated cardiomyopathy (DCM), suffering heart failure and in need of a new heart.”

Lucie’s journey 

In 2011 Joanna’s then two-year old daughter, Lucie, experienced a severe heart attack and was sent to Great Ormond Street Hospital (GOSH) after being diagnosed with dilated cardiomyopathy (DCM).

“The condition meant that Lucie’s heart had become enlarged and could not pump blood effectively around her body” Joanna explains.

The family faced the difficult decision of putting Lucie on a Berlin heart, which is a mechanical pump that does the heart’s work to pump blood around the body.

“The experience meant that Lucie would spend a number of months in intensive care at GOSH to be assessed for a heart transplant, the only thing that would improve her condition.”

Throughout Lucie’s journey, the family were cared for by Dr Matthew Fenton, Consultant Cardiologist and Director of Paediatric Heart Transplants at GOSH, who Joanna speaks highly of: “Being in intensive care is scary and intimidating, but Mathew would come check on us regularly, explaining what was happening and all of the next steps. He helped us through even though we knew that the odds were stacked against us, because finding the right match for such a young child is incredibly difficult and rare, but Matthew’s positivity, dedication and honesty gave us hope”.

Eight days after Lucie went on the Berlin heart, she received her transplant.

Facing a similar situation 

“We never imagined that seven years later we would be in the same situation with our second daughter Isobel – who was then four years old. During an appointment with Lucie in winter of 2018, it was Matthew who picked up that Isobel had the same condition through regular scans.

“Initially, we thought the condition could be managed with medication as the condition presented itself as mild, and Isobel was so healthy. However, the following Easter Isobel became unwell and we were told she was suffering massive heart failure. I was inconsolable. We couldn’t believe we’d come through it with Lucie, only to have Isobel get so ill that she too would need a transplant to save her life.

“Isobel was also placed on a Berlin Heart due to the unnatural rhythms of her heart, but then she suffered a brain bleed and became completely unresponsive. My husband and I were terrified that she wouldn’t make it to the transplant. We spoke to Matthew and told him that all she needed was a bit of time, and he listened. Throughout our whole journey we had absolute faith in him, and he had faith in us too. Two months after her brain bleed, Isobel started responding, waving her hands and opening and closing her eyes. I couldn’t believe it when my husband sent me the video.”

“In the summer of 2019, she was listed for a transplant and over a week later received that precious gift.”

The importance of organ donation 

Reflecting on how far they've come, Joanna says: “We’ve felt so fortunate to receive life-saving heart transplants for both our girls, which wouldn’t have been possible without organ donors, who made the most generous gift anyone could.

This Organ Donation Week, we want to encourage families to talk about their wishes with their loved ones and consider signing up to be a donor to help save more lives everyday.”

For more information about organ donation, including how you can help and information on how the law has changed this year, visit the NHS Organ Donation website.

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