Miller Asha Shauni Jacob was born at 10:41pm at Tauranga Hospital naturally following a routine pregnancy, When Miller was born she had an Aspar Score of 8, then 10 then 10. Miller got checked over by all the hospital staff required and then she had an hour skin to skin with us. During this time Miller's oxygen level decreased and our midwife decided to send her to Tauranga SCBU for another check up.
Miller was placed on oxygen and we both spent the night beside Miller "oooing" and "ahhhing" over her hair and her beauty, We knew she was having trouble with her oxygen but at this stage they were being proactive and doing tests on Miller to find out the why her oxygen levels were not stable.
On Millers second night her oxygen levels continued to decrease, even with support of oxygen and cuddles from her mum and dad. We were told by the doctor in charge that it maybe likely that Miller would have to get air lifted to Hamilton NICU as they had a gas called Nitric Oxide. At 4am Miller required ventilation and the Hamilton NICU team arrived with the gas, Miller's oxygen levels picked up instantly and they carefully transported her to Hamilton Hospital.
Miller settled into Hamilton NICU and was there for 24 hours. During this time the Nitric Oxide gas and other special medicine was not maintaining Millers oxygen levels. This is when our world fell a part.
Our family was asked to meet in the boardroom, we had the “round table” conversation that Miller needed to go to Starship to go on an ECMO (extracorporeal membrane oxygenation) machine to save her, BUT in the same breath the doctor told us that Starship only had 3 ECMO machines and ALL of them were being used for other children and there was nothing more they could do. As we fell to our knees, no amount of money in that moment could help our daughter. Thankfully, a machine became available later that day and the Starship team placed Miller on ECMO and airlifted her to Starship PICU. Miller was on ECMO until the 28th April a total of 7 days. During this time she had 1:1 nursing, each nurse completing a 12 hour shift. The care that Miller received ensured us that she was in safe hands,
On the following days as Miller was off ECMO we were able to be more "Hands On" and help with all her daily cares. She loved when we talked to her. She was so nosey. She especially loved squeezing our fingers and staring into our eyes. while listening to her mum and dad read her stories.
Each day Miller achieved a new milestone.
But the hard thing, no matter the tests, X-rays or heart echocardiograms, the doctors were still unsure why Miller was so sick. Like us they hoped that she would get better and never know why she was so unwell.
Unfortunately on the 5th of May surrounded by her immediate family in the arms of her mum and dad, Miller passed away.
We later heard from the genetics specialist that a test revealed that Miller had Alveolar Capillary Dysplasia (ACD/MPV). Alveolar Capillary Dysplasia is a condition that effects infants lungs, effecting their ability to oxygenate their own blood. Miller was a brave strong wee girl. Unfortunately ACD/ MPV is a condition that can never be won.
Miller has changed our lives forever and because of our experience and love for Miller, we want to provide families and Starship with as much as we can so that no family needs to have a conversation about "resources". If we can help Starship help families and help families avoid this immense pain. Then we have honoured our daughter.