Lilygrace's Story

told by mum


At my 20 week scan, I was told by the sonographer that there was something wrong with my baby’s heart and we had to go back for further scans by cardiology and fetal medicine. They confirmed that my baby has the very rare Heterotaxy syndrome right atrial isomerism (two right atria, two right lungs, right sided stomach, left sided liver and no spleen). She also has complete atrioventricular septal defect, pulmonary atresia, right aortic arch (unobstructed) and more. Her full diagnosis is very complex. It was a great shock and it took time to process the diagnosis. But we had hope and faith that our baby girl would be a heart warrior through the challenges that were ahead and God would grace us through each trial.

I had a planned induction and after birth Lilygrace was immediately put on IV medication to keep her alive until she had her first cardiac catheterisation, PDA stenting, done at 4 days old. We had a very challenging first few months with Lilygrace being in and out of hospital and her oxygen saturation dropping too low when she was sick. We had a lot of appointments with cardiology, dieticians, immunology, community nurses, and health visitor.


Lilygrace then had her first open heart surgery just before she turned 6 months old. It was the bidirectional Glenn procedure and a right pulmonary angioplasty. She made amazing progress every day post-surgery and was out of hospital by day 11.

At the time of writing this story, she’s 18 months, and growing and developing amazingly. Most people would not be able to tell what she’s been through by looking at her. She has met all her developmental milestones and exceeded some.



We are so thankful for all the support, care and prayers we’ve received on this journey so far. And we appreciate it even more as we navigate the next steps. Lilygrace needs at least one more open heart surgery and we’re currently seeking second opinions on whether she would have the Fontan or if a complex biventricular repair would be feasible.



If you have been affected by any of the issues raised in this content you can contact or 0300 561 0065.

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