Amelia and Grace

Twins Grace and Amelia were born prematurely at 27 weeks. They have extreme chronic lung disease and Grace had her first open heart bypass surgery at 8 weeks of age.

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 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 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 (which seems to be closing over time) and during her heart surgery they had to put a hole in her atrium to help her pulmonary valve work more effectively.

Grace has less oxygen than others in her blood due to the plumbing of her heart, and can go dusky blue if she gets too upset. She is also showing signs of mild cerebral palsy and the family are undergoing therapy for that currently.

Both girls have extreme chronic lung disease from being born so premature, Amelia is on a steroid inhaler which has helped her immensely in terms of wheeze and work of breathing. Doctors also keep an eye on Amelia’s blood pressure as her aortic arch is narrow which causes high blood pressure.

The girls spent over 100 days in NICU, PICU and the local SCBU. Last year, they had a few long admissions to hospital with colds which quickly turned into bronchiolitis and pneumonia. Grace and Amelia are 20 months old now and both crawling around. They love following their 3 year old brother Mason around and playing with all of his things.