We are hoping to raise funds to go directly to Aberdeen Neonatal Unit as the love and care we received as a family while our baby boy Keegan was in there was just incredible.

Welcome to Keegans Journey.

At our 13 week scan in May, we were given the devastating news that our sweet baby had a Cystic Hygroma on the back of his neck measuring a huge 14.8mm (up to 3mm is classed as “normal”) we were advised that he would most likely have some form of chromosome abnormality so we opted to have a CVS (chorionic villus sample) to be carried out. This test involves a sample of cells taken directly from the placenta. We were advised at this time that given the size of the cystic hygroma, baby would be unlikely to make it to 20 weeks and we were offered a termination. We declined.

We got the results back and they showed as normal! We also found out that we were having the baby boy we had always dreamed of, but that there was a 60% chance he would have some kind of congenital heart defect.

At 18 weeks we had an early anatomy, all looked perfect except for 1 measurement of the heart that we couldn’t get as he was lying in an awkward position and was still quite small. A further scan was scheduled for 21 weeks.

At this scan the consultant still couldn’t get the images she wanted so referred us to Queen Elizabeth University Hospital in Glasgow to see the cardiac team. We saw them at 22 weeks and we’re given the news that our boy had Coarctation of the Aorta and Aortic Valve Stenosis. Both conditions were confirmed as operable so we started preparing ourselves to welcome our heart warrior. They also advised at this time that his kidneys looked “bright” and bladder small which could indicate further issues and asked if anyone had mentioned that I had a low level of amniotic fluid (oligohydramnios), we hadn’t been told this before. We were again offered a termination, which we declined. We were told the pregnancy would most likely end in miscarriage before 30 weeks.

We were advised at this appointment that baby would have to be born in Glasgow due to requiring surgery on his heart.

We left that appointment heartbroken. I started researching EVERYTHING including supplements that could possibly help. We also decided not to tell our daughter what was going on at that point as there were so many unknowns that we just wouldn’t be able to answer for her.

We saw our own consultant 2 weeks later who confirmed the amniotic fluid was almost non existent. His measurements put him behind growth wise but that wasn’t a concern given that we’re not the tallest family anyway.

From then we moved to weekly scans to check on baby’s growth, check the placenta looked ok, check blood flow in the chord, heartbeat etc. my amniotic fluid level was down to 0.5cm in 1 tiny pocket.  Knowing that amniotic fluid is essential for lung development, this made us very anxious.

We sat down as a family and discussed names. After a process of elimination we settled on Keegan Tate. We decided not to purchase anything until he was here as to not “tempt fate”

We had a follow up appointment in Glasgow at 32 weeks where they advised his heart conditions had changed slightly: Coarctation of the Aorta was still there, narrow LVOT and pulmonary valve stenosis. We also got a formal diagnosis of oligohydramnios/ anhydramnios and pulmonary hypoplasia (incomplete development of the lungs). We were also told at that appointment that we would now be delivering in Aberdeen so that we had our support network around us. Reading between the lines, I knew what that meant.

We discussed birth options with our consultant and decided that a C Section would give Keegan the best possible chance. It would allow us to ensure we had the right people present to help him. There was a chance that he wouldn’t survive a natural delivery and even knowing the risks to myself and my health by having a C Section, that was a risk I just wasn’t willing to take. We scheduled the appointment for 2nd November 2022 but at his next 2 scans, he didn’t put on very much weight at all and had fallen off the chart growth wise (IUGR) so the date was pulled forward to 26th October 2022.

His estimated weight at our last scan was 4lbs 14oz.

Knowing the date was coming ever closer that we had to hand our baby over to someone else to look after played havoc with my emotions.

26th October arrived. We were full of mixed emotions, excitement to meet our beautiful baby boy, but absolutely petrified of what was to come. Would he cry? Would he breathe? Would they manage to stabilise him? Would everything go ok?

In true “Emma” fashion, we had a few issues to overcome before they could even start the op (failed cannulas, failed spinal, blood pressure crashing to name but a few!) but once we got that sorted out it was time to meet our boy. 

At 14:49 our teeny little man made his entrance weighing 5lbs 10 1/4 oz  and was the image of his big sister (and daddy!), I don’t think I’ve felt a mix of emotions like that in my life. He didn’t cry but they managed to ventilate and stabilise him very quickly. We didn’t get to hold him but did get to stroke his little cheeks before he was whisked away to the Neonatal Unit.

And this is why we are fundraising for the Neonatal Unit.

Keegan had an ultrasound of his heart, abdomen and brain. They confirmed that he had Coarctation of the Aorta but no other obvious heart conditions, brilliant we thought! Then we were dealt the blow that his kidneys hadn’t developed properly. This meant he would not be able to produce urine, and therefore, would not survive. While we had been trying to prepare ourselves for this outcome, hearing those words hurt in ways we didn’t know existed. All they could do was keep him comfortable until the inevitable happened.

I was given a room on the neonatal ward so that I could stay as close to Keegan as possible.

The nurses made it their mission to help us make as many memories with our darling boy as we could. 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, foot prints and hand prints in it too! That little boy had more paint and ink on him through memory making than most toddlers!!

We got to change his nappy, which was videod by the nurses, and thank goodness because it was a riot! Let’s just say, we didn’t ever expect to see anything in his nappy, but that little man of ours sure knew how to poop!

All 3 of us even managed to have a cuddle with him! It wasn’t an easy task, 3 nurses were required to make sure his tubes stayed in place and that he was lifted properly. Those cuddles will stay with us forever.

He had the nurses wrapped round his little finger, he only liked being on his left hand side and he made sure everyone knew that. If he wasn’t on his left he would pull off his wires, move his head about, flap his hand and foot about so all the alarms would go off. And then he would get his own way and fall asleep. A diva just like his sister!

We spent hours each day by his  side. We sang to him, read stories, he watched movies with his big sister, made Halloween decorations. Mollie-Rose & Keegan even won a prize in the Halloween dress up competition.

During all of this, discussions were had between us and the Dr’s which we relayed to Mollie-Rose so that she knew what was happening. Her one request was that she could spend Halloween with him.

We had to make the harrowing decision to withdraw treatment the following day, 1st November 2022. A decision no parent should ever have to make.

1st November arrived, our hearts were heavy but we were determined to try and enjoy our last few hours with our boy. Around 2pm, we decided it was time to let our boy go. The Dr’s were assembled and we advised them how we would like things to happen. His medication was stopped and his machines switched off other than his ventilator. We went through to the room that I had been staying in and shortly after, Keegan was brought through. They removed his breathing tube and he was placed in my arms. We cuddled him, and kissed him, we told him how much we loved him and that it was ok for him to fall asleep whenever he was ready.

He passed away peacefully at 16:36 aged 6 days old.

We got to spend a few hours with him, making more memories, bathing and dressing him for the first time, before the funeral directors came and collected him.

During our stay in the Neonatal Unit, the love and care shown by each and every member of staff  was so comforting. They became like our extended family even though we were only there 6 days.  They laughed with us, cried with us, hugged us when we needed it, they looked after Mollie-Rose and kept her involved. They entertained her with arts and crafts to pass the time and had chats with her when she was struggling. They cared for Keegan with dignity and empathy and made our worst nightmare that little bit more bearable.  We watched them battle daily (sometimes multiple times a day) to balance Keegan’s medication, making sure his infusions were working and adjusting them if and when the numbers required it. They were determined to get him to 1st November for us and they respected our reasons, even though it made their jobs tricky at times. We were involved 100% in Keegan’s care, nothing was ever kept from us but things were shared with empathy and compassion.

The staff are true earth angels.

Keegan Tate Downie 26/10/22 - 1/11/22