Jakayla and baby Miller in hospital. Photo / Supplied
Jakayla and baby Miller in hospital. Photo / Supplied
Three days after Miller Jacob was born her parents were told she had just hours to live as the only machines that could keep her alive were all in use.
"We would have sold all our houses, we would have literally done anything," mother Jakalah Jacob told the Herald.
They needed an ECMO (extracorporeal membrane oxygenation) machine but the only three available at Starship Hospital were in use, meaning little Miller would have had only hours to live.
"Nothing, no cent, no dollar, no wish could make the machine available for when we needed it."
Later that day one of the lifesaving devices became free, meaning the couple got to spend 13 more days with the child.
"We got to know who Miller was. And her aunties and uncles, they all got to come up here, as well all of her grandparents."
Through tears, she described the mornings her and her husband Chad Jacob got to share with Miller, seeing her brown eyes, washing her and reading her Hairy McClary books.
Miller was born on April 19 this year with persistent pulmonary hypertension of the newborn (PPHN), which resulted in her needing specialist care.
Jakalah said doctors had hoped that with additional help and time the PPHN would disappear on its own, but this was not the case.
Later they found out the baby had alveolar capillary dysplasia, ACD/MVP, a rare condition that affects neonates lungs, and once the placenta is no longer breathing for them they instantly lose oxygen levels.
It's a condition you cannot survive.
Before having Miller, Jakalah said they had never heard of ACD/MVP, but her child wasn't alone; she said there had been 249 documented cases since 1940.
Now, the couple have launched Miller's Movements to honour her life, and in the hope no parents have to say goodbye to their child because New Zealand doesn't have the resources.
Those precious 16 days they did get with Miller are why they started the fundraiser. So far, the Jakalah said they have raised $21,000 which will go towards Starship Hospital.
"That's why we are passionate about raising money for Starship and telling you our story because if we can make one resource available for one family then we'll feel like we've done our part together as a community and nation if we could give them a little bit more."
She said miracles happen every single day and getting just "one more" bit of equipment is something everyone can help with.
"We want to help those families have those moments with children and for families not to worry about resources but just to put all this energy into the children. If we didn't have that time we would have lost Miller at three days old."
Starship foundation chief executive Aisha Daji Punga said they were deeply grateful to Jakalah and Chad for bringing their community together to fundraise for Starship's children, in memory of their beloved daughter Miller.
"The funds they raise will support tamariki from all over New Zealand, who rely on Starship for world class care and specialised treatment such as ECMO."
