Ava's Story (Belfast)

Ava is a twin and was born in Northern Ireland, at the Belfast Royal hospital on 21/10/19, her brother Olly doesn't have any syndromes or health problems.

I gave birth naturally but needed help via vacuum. I got to hold my boy first but Ava was whisked away into an incubator and straight to NICU. I didn't get the chance to hold her or see her. The next day I managed to have skin-to-skin with her delicate small body. She was tested for Edward's syndrome and Patau's syndrome as she had symptoms. Luckily tests came back negative. She was diagnosed with ZTTK a few weeks later. My partner and myself have had genetic testing and it came back negative - not inherited from parents. She was born 3lbs 5oz and had IUGR. Ava was born with 3 holes in her heart (was scheduled to have heart surgery), cleft palate, abnormal low set ears, deafness, duplex right kidney, sacral dimple, eye squint, thinning of corpus collosum, severe GORD and calcification of the skull. Ava is tube fed due to having feeding problems and having a cleft. She was transferred from Belfast Royal Hospital to Antrim Neonatal and stayed there for 2 months. Whilst here, we discovered she has MRSA. She also had bronchitis and needed breathing support as her heart could not take the strain and work. She received my colostrum and was breast fed through the NG tube for the first 3 months. She also took formula to keep up her weight. But unfortunately I had to stop as she wasn't gaining enough weight, which upset me as I was breastfeeding her brother. Once she improved a little, she was then transferred to Causeway Hospital children's ward, where she stayed a further month or so until she got to the ideal weight to be discharged. She took Omeprazole for her severe reflux and Spironolactone and Furosemide for her heart failure. She receives Occupational therapy and Physiotherapy and is seen by a dietitian on a regular basis. Ava was allowed to come home at 4 months old. Since then she was seen by the Cardiologist at Belfast Royal Hospital to assess her heart condition. To his surprise the holes had spontaneously closed over! I was so relieved. However he mentioned she has a heart murmur and Bilateral SVC's (two veins in the heart instead of one) which will have to be monitored regularly. Ava then went on to have her cleft palate surgery, which healed within weeks. Howevr she still can't chee/suck and is still tube fed. Ava is now 16 months old and improves everyday, she has surprised us all and has made us the proud parents we are today. She is our little miracle.