Sebastian

Sebastian entered the world fighting. Born with a severe brain condition, doctors warned he might never swallow or even breathe on his own.   

But the extraordinary teams at St Michael’s Neonatal Intensive Care Unit (NICU) and Bristol Children’s Hospital helped Sebastian defy everyone’s expectations. 

His mum, Molly, shares the powerful story of her baby’s devastating diagnosis and how Cots for Tots became a lifeline when she needed it most.    

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“The first time I knew something was wrong was at my 20-week scan. The nurse had warned my partner and I that she’d be a bit quiet while she was doing the scan, but it seemed to take forever, and she wasn’t saying a word.   

When the nurse finally spoke, she said: “I’m really sorry. I think there’s something wrong with your baby’s brain. I can’t see all of it.”  

The nurse booked us an appointment with foetal medicine the following week. We headed home, but I was hysterical at this point. I work in the hospital where I had my scan, so we stopped on the way out to see my manager. She came out of her office very excited because she thought I was going to show a picture from my scan. Then she saw my face. I told her I was scared that my baby was going to die.   

Our foetal medicine consultant was very lovely but had to be very honest with us. Initially, they had thought Sebastian had holoprosencephaly, which is when a baby’s brain fails to develop properly. The consultant reassured us that Sebastian’s brain was all there, but he had something called severe ventriculomegaly, meaning the ventricles in his brain were enlarged. This condition was developing into hydrocephalus, a build-up of fluid which puts pressure on the brain.  

Sebastian’s case was very bad. He could have a global neurodisability, leaving him unable to breathe on his own or swallow. He could be profoundly disabled, epileptic and have no quality of life. I was given the option to terminate my pregnancy at any time because of the severity of his condition. 

Sebastian’s head was so big that I needed to have a C-section. We were transferred from our local hospital in Devon to St Michael’s NICU in Bristol. NICU is just up the road from Bristol Children’s Hospital, so if Sebastian needed surgery immediately after being born, he could be in the operating theatre in minutes. 

We’d been told by genetics that some babies with hydrocephalus don’t breathe when they’re born. But as soon as Sebastian was born, I could hear him crying. He was fighting from the moment he arrived.  

They took him over to do some checks, put a little hat on him and then they let me hold him. It was surreal; I didn’t think I’d be allowed to hold him close. He was taken to NICU about 10 minutes before I was done in the operating theatre.  

When we arrived at St Michael’s Hospital, Cots for Tots gave us a welcome bag which included cloth comforters called Miniboos. I’d put one of the Miniboos in my bra and leave the other with Sebastian in his incubator, before swapping them around. It meant that he could feel close to me when he was in NICU overnight. I still have our Miniboos in my little memory box. 

Cots for Tots also signed us up to a system called vCreate, where the NICU staff could share photos and videos of Sebastian with us when we couldn’t be on the unit. I used to ring NICU every time I woke in the night, so to see a message waiting for me on vCreate used to make me cry. 

Five days after he was born, Sebastian had brain surgery at Bristol Children’s Hospital. Sebastian’s hydrocephalus was caused by a blockage in the third ventricle of his brain. He had a procedure where they created a small hole in the bottom of his third ventricle to help drain the excess fluid. 

Sebastian was remarkably awake after his surgery and came off his ventilator within a couple of hours. We just sat with him in NICU, and the staff let us cuddle him.  

The night after Sebastian’s surgery, the angels from NICU sent me a little video of him on vCreate to let me know that he was safe and doing okay. I still have the comment and video from that night on my phone. I look at it every now and then, and it still makes me emotional that someone cared enough about our baby to take some photos of him and write something nice. 

We were in NICU for a total of nine days. My partner, Declan, moved into Cots for Tots House two days after Sebastian was born, and I joined him once I’d been discharged from the maternity ward. 

We had a beautiful room, with a lovely shower and such a comfortable bed, as well as space to cook in the communal areas. We didn’t have to worry about spending money on a hotel or being too far away from our baby. Once I’d been discharged, I’d often walk over to NICU in the middle of the night just to sit with Sebastian.  

We stayed in Cots for Tots House at the same time as my mum’s next-door neighbours, who spent nearly a year living there. Obviously, it was not nice that we were all in this situation, but being around people we knew, who understood what we were going through, made such a difference. 

I was amazed to finally leave NICU. We spent the first 13 days of Sebastian’s life in the hospital, so we were worried about being on our own. We had home visits from the NICU team for about a week and a half, and then a series of follow-up appointments, which were really reassuring. I went to therapy for everything that I’d been through, as it led to a difficult period of postpartum depression.  

But, a year later, we feel so confident. Sebastian had another MRI scan at the end of October, and the results were fantastic. 

We’d been told that Sebastian may never walk. He might not hit the normal milestones you expect for a baby, and he might have all these other conditions associated with hydrocephalus. But Sebastian has yet to miss a milestone. He just finished his first grade of swimming, and he loves it. Recently, he’s started sitting unsupported. 

It makes me cry every time Sebastian hits a new milestone. My friends and family must be tired of hearing about everything my baby can do, but I’ll never get tired of telling them how much he’s achieved and will continue to achieve.”