Friday 17th June 2022

Such a hard, emotional and at moments devastating day yesterday.

I went back to SCBU at Raigmore for the first time since losing Amber for a meeting with her paediatric consultant Philine and Joyce her neonatal consultant in Glasgow.

It was an opportunity for me to discuss Amber, her care, address any questions or concerns I had and feedback, as well as see many of the doctors and nurses who looked after us and whom I miss so much as well.

I met with my psychologist first to try prepare myself and give me the strength to go through with it.

In Scotland there is always a review of every death in children under 18, I’ve been offered the opportunity to contribute to this which I have accepted, though I’m not looking forward to it I feel it’s important.

I also brought up my concerns about how Amber’s diagnosis was given to me at fetal medicine in Glasgow. It’s been agreed to set up a meeting with them to feedback and advise them the effect it has had on me, Ambers consultants have agreed to be there with me for support at that.

My hope is that it will help parents in the future who have this devastating and complicated diagnosis.

I want them to know that ‘Not compatible with life’ is NOT an acceptable way to break the news.

Trisomy 18 is life limiting yes, but parents need to understand their options and be given hope.

I was also able to ask and try to understand ’episodes’ that Amber was having in her last week. They believe her symptoms were likely a combination of her heart failure, her getting tired and potentially seizures. This was really heartbreaking to discuss but it’s been playing on my mind and though I’ve never truly doubted my decision to bring her home, occasionally I do have ‘What ifs..?’ What if I had risked the surgery on her heart?

Though not comforting her doctors both agree she likely would have not made it through the surgery.

I have to try and find comfort that I had her at home and have memories of her here with myself, Coreigh and our family.

I then went up to SCBU and saw 4 of our favourite nurses, Bethan one of Ambers main nurses but also Ginny, Mairi and Alison. It was lovely to see them all but tears were shed.

Hardest of all, as there were no babies intensive care… I wasn’t sure if I could go in that room again but felt the need to see where Amber spent her first 5 weeks.

They left me alone and I sat in the recliner I’ve sat in so often, by the incubator which had held my baby girl and cried and cried. From that position I could almost believe she was still in there and listening to the beeps of monitors from the next room took me back in an instant… yes definitely a ptsd trigger for me and a sound I still wake to often and can hear in my head.

I do have an open invite to pop in to Scbu anytime to see everyone and I spoke to them about Ambers birthday and the gift baskets so that’s all in motion and agreed.

I also gave them the £250 cheque raised at Ambers service so I’ll let everyone know what they spend it on in due course. I hope it buys something much needed for the ward.

I feel drained and exhausted and extremely tearful but I’m so proud of my Amber and how much she was loved by everyone.

The impact she has had and continues to have on people is beautiful.

I miss you baby girl, love you to the moon and back