Desperate fight for Agnes family's brand new baby

Andrew Solomon Domorev was born with Down Syndrome, bowel blockages, hyperthyroidism and incompletely developed lungs.

ALL THE LOVE IN THE WORLD: Mum Rebecca Domorev at Andrew's side. Picture: Contributed

AFTER an intensely emotional week, the one thing the Domorevs can always be sure of is they will stick together.

The Agnes Water family's lives were turned upside down last Wednesday, when parents Rebecca and Alexei went to Bundaberg Hospital for Rebecca to give birth to their third son.

Half an hour after Andrew Solomon Domorev was delivered, it became apparent he was having trouble absorbing oxygen.

He was transferred from Rebecca's room to a separate room with an Isolette - a type of incubator for newborn babies.

As well as those immediate concerns, doctors told the couple Andrew was showing indications he may have Down Syndrome.

"It was a complete shock," Rebecca told The Observer.

"We had absolutely no idea, none at all (because) I elected not to do the Down Syndrome test.

"I wouldn't have changed anything if I had got a positive test, so I didn't see the benefit."

Rebecca said she had felt "panic" when she was told blood test results to confirm the diagnosis would not be back for two to three days.

"That was really tough," she said.

"But my friend had had a baby two days before, and she was there as well.

"We're both Christians, we have a strong faith, we prayed together and we cried.

"There were still tears, still grief. But there was no anxiety, which I was shocked about.

"I was just able to cry and feel what was going on... I felt incredible peace."

Alexei Domorev with son Andrew Solomon. Picture: Contributed

The following day, doctors told the couple they had found blockages between Andrew's bowel and his stomach, meaning he would need to be flown down to Brisbane immediately to be seen by specialists.

Rebecca said watching paramedics from the neonatal retrieval service packing her son into a carrier bed to be boarded onto a Royal Flying Doctor Service flight was "quite traumatic".

"One of my sons got really upset when they packed Andrew in the cot, and I just saw the love he had for his little brother," she said.

"That was the moment I just thought, I have to fight for this boy because of the love my son has for him."

When the family was finally able to be flown down to Brisbane the next day, doctors at Lady Cilento Children's Hospital had operated on Andrew and removed the blockage.

The diagnosis of Down Syndrome has since been confirmed, along with separate diagnoses of pulmonary hypoplasia (incomplete development of the lungs) and hyperthyroidism.

Hyperthyroidism requires immediate medication for newborns to avoid potential complications later in life, including the possibility of a lower IQ.

That medication can only be taken orally - but because of the time it was taking for him to recover from the operation to remove the bowel blockages, doctors were uncertain at first as to whether Andrew was absorbing the medication.

Thankfully, Rebecca yesterday said that was no longer the case.

"A couple of days ago when they started giving him small feeds, they started discovering he is absorbing the milk, which means he is absorbing the medicine as well," she said.

Rebecca said despite the complications caused by the sheer number of Andrew's medical conditions, she, her husband and their other two boys Peter and Paul were determined to make the best of the situation and celebrate the new addition to the family.

"My husband said 'We're in this together, we'll just take it how it comes," she said.

"(Andrew's) face is so serene, it's just been quite amazing.

"There's been these moments where we're like, 'What's our life going to be like from here?'

"But we know God's on our side, and regardless of the situation, he hasn't turned his back on us."

Rebecca said she had come to love Andrew's middle name, Solomon, which means peace.

"It's a beautiful reminder of the underlying peace we have felt through this journey," she said.

"It almost doesn't make sense to refer to him as Andrew without using Solomon as well.

"The boys have been amazing too. To start with we didn't tell them what was going on, but after a while we realised we needed to.

"One of them just said 'That's a bit annoying'.

"They've got so much love for their little brother."

SUPPORT: Andrew's brothers Peter and Paul at Lady Cilento Hospital. Picture: Contributed

The family is now staying at the Ronald McDonald House in Brisbane, opposite Lady Cilento where Andrew is in the neonatal intensive care unit.

"(Ronald McDonald House staff) have been amazing," Rebecca said.

"They mostly deal with accommodation but they are helping with other things... I don't feel like I have to remember everything."

She and Alexei are preparing to spend a long time in Brisbane, as doctors have told them Andrew's condition, while improving, could go backwards at any time.

Peter and Paul will stay with them as well for as long as possible.

"We've decided that we need to be together as a family through this," Rebecca said.

"We've had to buy extra items of clothing, because we came straight here in a rush from Bundy instead of coming home to Agnes."

SMALL STEPS: Andrew is receivng trophic feeds until his stomach is ready for proper foods. Picture: Contributed

Both Rebecca and Alexei run their own businesses in Agnes Water, meaning neither of them receive a wage (though they will be able to access the Federal Government's usual Paid Parental leave scheme).

Due to the financial stress caused by the situation, Rebecca's sister and sister-in-law started a GoFundMe page last Friday to raise funds for the family.

The fund had raised almost double its $5000 goal as of this morning, mostly due to contributions from close friends and family.

Rebecca said she was "blown away" that people had been so generous, but at first didn't feel quite comfortable accepting donations.

But after speaking with a nurse at Lady Cilento who had an adult cousin with Down Syndrome, she began to realise how important intensive early intervention was for people with the disability when it came to quality of life in their later years.

"The long term is now on my mind - things like physio and speech therapy," Rebecca said.

"There is government funding that goes towards those things, but I think we're going to be needing a lot more.

"We just don't know what's ahead of us, we don't know if we'll have to leave Agnes - I don't want to do that.

"But we are going to do what it takes to get Andrew living a functional and independent life."

• Click here to go to the GoFundMe page.

Originally published as Desperate fight for Agnes family's brand new baby