Amelia & Grace

Ambassador for: Preterm Health
Amelia & Grace

Grace and Amelia were diagnosed with a rare condition called Twin to Twin Transfusion Syndrome at 20 weeks gestation. They received lifesaving laser surgery in utero and were monitored very closely by the Auckland Maternal Fetal Medicine Team.

Grace developed hydrops after that surgery and went into heart failure. Her parents were told she would have to get to 32 weeks gestation for the doctors to be able to help her heart. The twins arrived very early at 27 weeks and 1 day. Grace a very swollen 1300g and Amelia a tiny 880g.

The twins had a rough time in NICU with infections and blood transfusions. Grace had her first open heart bypass surgery at 8 weeks of age when she finally hit 2kg. She has severe right ventricle dysfunction, dysplastic tricuspid valve and pulmonary valve, muscular ventricular septal defect and during her heart surgery they had to put a hole in her atrium to help her pulmonary valve work more effectively which was closed in 2022 resulting in her finally being off home oxygen therapy. Both girls have extreme chronic lung disease from being born so early which can make winters a little rough.

Grace also has cerebral palsy and global developmental delays. She works closely with a physical therapist, occupational therapist, speech language therapist, dietician, hippo therapy (riding for the disabled) and does lots of home therapy to work on decreasing the spasticity and building strength, coordination and balance.

The girls have managed a few days a week at kindergarten since turning 4 and will be off to school with their big brother watching over them; and attend dance class (with the help of Mum) - they both loved performing on stage for the end of year recital.

Amelia & Grace

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