I overheard the doctor on the phone, telling the person on the other end to get ready for us at the Freeman Hospital. I knew that the Freeman Hospital specialised in taking care of children with heart conditions but I still didn’t realise that this meant our baby had a problem with her heart. By midnight, my partner, Scot, and I were sat in the parent’s room as our daughter was admitted to the Paediatric Intensive Care Unit (PICU) and attached to a machine that would take over the work of her heart.
Neive was three months old and her heart was failing. She was diagnosed with ALCAPA syndrome, where the left coronary artery, which carries blood to the heart muscle, begins from the pulmonary artery instead of the aorta. This ultimately means that the heart muscle does not receive enough oxygen rich blood and causes the heart to go into failure.
“We live in Newcastle but I couldn’t imagine getting a phone call when I was away from Neive and having to get across the city to be with her. It doesn’t bear thinking about. At Scott House I was a few minutes’ walk away from her side.”
This was a huge shock to us as throughout our pregnancy everything seemed fine. The only things out of the ordinary at her birth were that her nose seemed to be a bit blue and she wasn’t feeding. I did ask about why her nose was blue as it was something I hadn’t seen before but I was told that it was common in such a quick birth. To help her feed, Neive was given an NG tube for the first couple of days but we went home. Over the next few weeks I noticed that, unlike her older sister Olivia, she wasn’t drinking as much and then she developed a cough, which a nurse later described like the sound of a bird.
I was concerned and was on the phone to the doctors regularly. I worried that if she wasn’t well her immunisations, which were fast approaching, would make her poorly. It was decided to go ahead with the immunisations but a few days later there were a number of things that I noticed which were unusual. Neive was pale, clingy, sleeping a lot and not drinking her milk. She would cry when my mam tried to hold her which was out of the ordinary as usually she’d be fine with her. I rang 111 as I was concerned and was also asked to pick her arm up and drop it, it seemed to be flopping like she had nothing in her to keep it up. Eventually, I was told to take her to the walk-in centre.
“I had so much anxiety about leaving Neive and this was how Scott House helped me. If anything did happen I would be there.”
From the moment we walked through the doors of the walk-in centre, Neive’s condition changed dramatically. Her breathing was too fast and her heart rate was really low. She was put on oxygen and an ambulance was called. I still had no idea what was going on at this point. I would have never expected the outcome.
We arrived at Newcastle’s Royal Victoria Infirmary (RVI) and despite the restrictions around COVID, I was told to call Scot to get him to come along. Looking back, I truly believe this is because they didn’t think she’d survive. She was poked, prodded, and had needles in and out of her but she didn’t react one bit. Her skin was mottled and she just lay there motionless.
A cardiac specialist from Freeman Hospital came to the RVI to do scans and tests on Neive. Within hours we were transferred to that hospital. When we arrived at Freeman Hospital, Neive’s heart was barely beating. That night and the following few days were a blur as our daughter fought for her life and underwent emergency open heart surgery which lasted nine and a half hours. One thing that isn’t a blur is how desperate I was to be by her side throughout it all. I could not bear to leave my daughter’s side. I couldn’t bear it. Fortunately I didn’t have to because I was soon told about Scott House, run by The Sick Children’s Trust.
For six weeks Scott House was our base. Scot and I both stayed there every night for the first couple of weeks while Neive was in hospital. We’d take it in turns going to see Neive to make sure she was OK and then swap over so one of us could have a bit of rest. Scot was working from home so when he wasn’t at the hospital, he’d work from Scott House which was a huge help as it meant he could still do his job. For me, it was a huge help because I was so close. We live in Newcastle but I couldn’t imagine getting a phone call when I was away from Neive and having to get across the city to be with her. It doesn’t bear thinking about. At Scott House I was a few minutes’ walk away from her side.
“I could not bear to leave my daughter’s side. I couldn’t bear it.”
I worried a lot about Neive going down for her surgery. I remember asking the nurses if she’d survive it. I didn’t know that the recovery would be the biggest risk and the hardest part. We were in Freeman Hospital in total for 12 weeks while Neive recovered. As the weeks went by, Olivia began to notice things changing so Scot and I would alternate who slept at Scott House and at home. It was really hard being away from Olivia, but when Neive was unstable I struggled to be away from her. I would make sure though to go home every day to see Olivia as we both needed that time together – to play and have cuddles.
I had so much anxiety about leaving Neive and this was how Scott House helped me. If anything did happen I would be there. In all honestly, I presumed that with my baby being in hospital I would be able to just sleep by her bedside, but it isn’t possible. Scott House was the closest I could be to her. I barely slept that first month and know I wouldn’t have settled at home. At least being at Scott House I could relax, just a little, because I knew I was just minutes away.
We live locally but I know from our time at Scott House that lots of families are from much further away. It is such a great help for all of us who have children in hospital.
Since her open heart surgery, Neive has been doing really well and overcome lots of different challenges. She was intubated for a long time and in February ended up having a tracheostomy. One of the valves in her heart is also leaking but we have been reassured that it should fix itself.
You’d only know Neive had been poorly because of the tube in her nose. I thought she may have been behind in hitting her milestones, but she isn’t at all. She’s crawling everywhere and so keen to stand up and get walking. She’s a brave girl and doted on by her big sister.
Laura Cooper, Neive and Olivia’s mum
