"I felt like I was being forced to choose between my children" - Ellie's story

Xander was born in June 2020 after a relatively normal pregnancy, but a long and difficult labour. As well as being back-to-back, he also had shoulder dystocia and when he was born he needed to be resuscitated and struggled to breathe on his own for six minutes. That being said, he appeared to recover quickly and we were soon back in our room for tea and toast and newborn cuddles. A couple of hours later, Xander started making strange grunting noises, he wasn't feeding, and the midwife called the pediatrician who said he was probably hungry.

After some help, he managed a feed, but five hours after he was born, Xander suffered a seizure. He was immediately taken to special care, I was taken to the ward, and my husband had to leave. I spent the night feeling completely shell shocked, not knowing what had just happened, on my own with no baby and, due to coronavirus, no husband and no visitors.

The next morning the pediatrician came to tell me that Xander had another, bigger seizure in the night. It took some time to stabilise him and he was now sedated and on anti-seizure medication. I was asked to start expressing colostrum and to prepare for a transfer to a hospital which was more suited to care for him.

When I finally got to see him, I was shocked to see his little body covered in wires, including the wires going into his head to monitor his brain. Xander was being prepped to be transferred by ambulance to a NICU 70 miles away from our home. My husband arrived and we followed the ambulance, arriving not long after. We couldn't see Xander for a few hours as there was restricted visiting due to coronavirus.

We waited outside until we were allowed to go in and we were especially fortunate that it was late at night by this point and the NICU had no other visitors, so they let us both visit Xander together. Xander was born full term and was 9lb 15oz! He looked huge next to the premature babies that were lying alongside him. That first night was the last time we were allowed to visit at the same time until he was discharged.

The next few days were filled with expressing milk, so many tests and scans for Xander and facetime calls with our older son, Max, who was staying at Granny and Grandad’s. In normal times, Max would have been allowed to visit Xander with us, but due to being in full lockdown, there was a ban on all visitors except parents, so we didn't see each other at all except for two visits in the hospital car park when my parents bought him to see me.

It was incredibly hard being separated, I felt like I was being forced to choose between my children and I met other mums who were in the same position. One mum was so far away from her home, she hadn't seen her older daughter for almost three months.

After days of not knowing what had happened, a doctor sat my husband and me down and explained that Xander had suffered an ischemic stroke. We were completely stunned. How could a baby have a stroke? Why did it happen and when? We had so many questions but no answers. Even though it was later found there were no infections, he was being pumped full of antibiotics and antivirals just in case, so much so that it caused his cannula to keep blowing. He had them in his hands, his feet and even his head, but there was so much liquid going through, his tiny veins could not cope.

After nearly three weeks, having ruled out infections, trauma and no obvious signs of heart abnormalities, we were allowed home. Xander was placed under the care of the outreach team who will continue to monitor his health and development over the next two years. He has a physiotherapist, occupational health therapist, speech therapist and dietician as well as a nurse and consultant who also monitor his progress.

In just a couple of days, Xander will be one year old, and although he appears to be hitting his milestones, he has had some more seizures which required him to be readmitted. It has been extremely frustrating to go back into hospital, especially when he seems to be doing so well. He has a slight weakness in one arm, which may be related to his shoulder dystocia and a droopy left eye when he is tired. He is still having tests to try to determine if the damage to his brain from his stroke is permanent and if there has been further damage.

The focus at the moment is why he has had further seizures. The worry was another stroke or permanent damage due to the previous stroke. He recently had a 48 hour ambulatory EEG and his third MRI under general anesthetic to have a good look at his brain, which thankfully ruled out a new stroke. He has a few appointments coming up, but we are hoping for no further hospital stays. Despite all this, Xander is an extremely happy, chilled out and content little baby who absolutely adores his big brother!

Xander's stay in the NICU and SCBU was unexpected, frightening and at times confusing. However, the nurses went above and beyond to make us feel as involved in his care as we could be, showing us how to change his nappy around all the wires, helping me to feed without accidentally pulling out his cannula and even fetching extra pillows for me as I was still recovering from birth. Although visiting restrictions were frustrating (we are fully supportive of Bliss' Parents aren't visitors campaign), we are hopeful that more and more hospitals are allowing both parents to be with their children.

We are still hoping for some answers as to what happened to Xander, but for now we are happy for the bright, cheerful and increasingly cheeky baby he is. We will be forever grateful for the doctors and nurses who saved his life and looked after him and us so well.