They were looking forward to their first cuddle with their baby son.
But Emma and Barry Downie knew that brave little Keegan was battling life-threatening conditions before he was even born.
It was a difficult pregnancy for the couple, who faced several tough decisions to give their baby the best chance of coming into the world.
Keegan was diagnosed with a cystic hygroma during their first 13-week scan in May this year, a cyst that had filled with fluid on the back of his neck.
“They prepared us at that point there was a very high chance that there were going to be some chromosome abnormalities and possible, further issues and they gave us the choice of tests we could have,” Emma explained.
It was an anxious wait for the Portlethen couple, but the test results for these further concerns came back clear.
“We also found out that we were having the baby boy we had always dreamed of,” Emma, 38, said.
“But that there was a 60% chance he would have some kind of congenital heart defect.”
However, due to the size of the cyst, the devastated couple were also advised it was unlikely their baby would make it to 20 weeks.
‘It was just like living on a knife-edge constantly’
There were encouraging signs during their mid-pregnancy scan with no concerning issues detected, although the doctor explained their baby was still small.
And there was one measurement of the heart they were unable to get because he was lying in an awkward position.
After being referred down to the Queen Elizabeth Hospital in Glasgow, the couple met a cardiac expert who discovered Keegan’s heart valve hadn’t formed correctly.
His kidneys also looked bright on the monitor and his bladder was small.
By week 26 there was no amniotic fluid and Emma was booked in for weekly scans to check on Keegan’s growth.
“It was a case of ‘you need to prepare yourself for the fact he may no longer have a heartbeat’ when you come in for your next scan,” Emma says.
“It was just like living on a knife-edge constantly.”
‘We decided not to tell our daughter Mollie-Rose’
By this point it was incredibly difficult for the couple, especially because there were so many uncertainties.
“Going back to the hospital scans, trying to function, going to work and dealing with everything going on in the background was pretty difficult,” Barry, 45, explains.
The caring couple are also parents to eight-year-old daughter Mollie-Rose and decided it would be best not to let her know about all the difficulties her brother faced.
Knowing the intelligent little girl would have lots of questions would be hard enough, especially when they didn’t have all the answers.
Thinking about what would be the best for their baby, Barry and Emma chose to go for a C-Section because he might not have survived a natural birth.
They were initially advised by medics they’d need to give birth in Glasgow because of Keegan’s heart condition.
“Then they told us they were going to allow the birth in Aberdeen so we had our support network around us,” Emma says.
“Reading between the lines, I knew what that meant.”
‘Hearing those words just shattered everything’
But the couple still had hope because Keegan “kept on fighting” every difficulty that came his way.
“At the initial appointment we were offered a termination at 13 weeks, and we were offered one when we went down to Glasgow,” Emma said.
“But this was his fight and while he was fighting to be with us we were going to do everything we could to make that happen.”
Little Keegan came into the world weighing 5lbs 10 1/4 oz on October 26.
But the family were then given the devastating news that Keegan’s kidneys had not developed properly.
This meant he wouldn’t be able to produce urine and, therefore, would not survive on his own.
“We just knew that there wasn’t anything that they could do,” Emma says.
“And I think that was the hardest bit. Hearing those words, it just shattered everything, it really did, every little bit of hope that we’d been hanging on to all those months.”
It was now time to tell Mollie-Rose that they needed to have an adult conversation to let her know what was happening.
By going through everything in stages it helped her take in all the information and come to terms with the difficult news.
‘We just wanted to try to find a way to thank them’
If it was not for the compassion and care of the neonatal team this would have been a much more difficult process.
“They were amazing for us,” sales executive Barry explains.
Staff were keen to make sure that Mollie-Rose was involved answering all her questions about her brother’s medicines and keeping her entertained with arts and crafts.
“The nurses made it their mission to help us make as many memories with our darling boy as we could,” Emma says.
“We had a journal which they filled out for him with poems and stories of what we all did through the day, it has photos, footprints and handprints in it too.”
Their daughter’s one request was that she could spend Halloween with her brother and the staff all worked hard to make that happen.
“It was a really nice day and it’s good that she’s got that memory to look back on, that she was able to have that time with him,” Emma says.
The couple had to make the difficult decision to withdraw Keegan’s treatment the following day.
‘They laughed with us, cried with us, hugged us when needed’
Hospital staff made sure the family could spend precious time with their baby boy and all got the chance to cuddle him.
And through contacting the Remember My Baby charity, a photographer was booked to visit the hospital to take family photographs.
“He had to be lifted so that the tubes and wire stayed intact and he coped brilliantly,” Emma said. “All three of us managed to get a cuddle which was just fantastic.”
Inspired by the work of the caring NHS Grampian staff, the couple have now fundraised more than £7,000 for the Aberdeen neonatal unit.
The money from the JustGiving fundraiser will help other families whose babies are being cared for in the ward.
“During our stay in the neonatal unit, the love and care shown by each and every member of staff was so comforting,” Emma, who works as a fleet team supervisor, says.
“They laughed with us, cried with us, hugged us when we needed it.
“We just wanted to try to find a way to thank them.”
“You need to be pretty special to work there,” Emma added.
“And now that we’ve witnessed it firsthand we think wow, they really are genuine earth angels.”
