Alfie's NICU Story - Cots for Tots

Alfie was only a few minutes old when he was put on life support.

Unable to breathe for himself, he was rushed to St Michael’s Neonatal Intensive Care (NICU) in Bristol for life-saving surgery.

His parents, Maria and Kyle, told us about their journey and what it was like to return to NICU and Cots for Tots House with Alfie nine years later.

MARIA: “From the moment we found out we were pregnant with Alfie, we felt something wasn’t right. 

I longed to have that happy feeling of being pregnant, but everything was going wrong. I was bleeding a lot. The 12-week scan showed that Alfie’s chance of Down’s syndrome was high. After the 20-week scan, we were told to see a heart specialist because not all the chambers of Alfie’s heart were visible.  

Finally, my water broke four weeks early, and we rushed to the hospital in Bath. The medical staff tried to induce natural labour, but the baby’s heart rate kept dipping up and down. They decided to get the baby out as soon as possible by giving me an emergency C-section. 

We just wanted our baby in our arms. But it was only once he was born that we really knew how poorly he was. 

Maria, Alfie’s mum

We still recall them dropping the curtain, holding the baby up and saying, ‘It’s a boy.’ Kyle looked joyful, but my heart sank: there was no noise coming from the baby.  

I looked at Kyle and said, ‘Something is not right.’ He asked me what I meant. I said: ‘He should be crying. Why is there no noise?’ Panic flashed across Kyle’s face, and he got up to see what was going on, while I lay there, helpless. Kyle came back in tears. I don’t even know what was said to me; I only remember seeing my baby boy being taken away on a trolley.

*Alfie after surgery in St Michael’s NICU.*

We were told that Alfie couldn’t cry because he had a diaphragmatic hernia. This means that his diaphragm hadn’t formed properly, leaving a hole which allowed other organs to move into his chest area and squash his lungs.  

Alfie was on life support, unable to breathe for himself, and in a medically induced coma. The doctors told us he was stable but that he needed to be urgently transferred to St Michael’s NICU in Bristol.”

KYLE: “Maria was still in the hospital in Bath while I travelled to Bristol. I was in tears. I felt scared and alone. I didn’t know what was going on, as I had never heard of the condition before. If our baby made it, what would his life be like? Would he have continuous medical problems? Would his lifespan be reduced? I didn’t know how long we’d need to stay in the hospital, or if we’d lose our baby at any moment. 

We were panicking because we had no name for a baby boy. All the old wives’ tales had pointed to our baby being a girl. I couldn’t bear the thought of him leaving us before we had named him. I was messaging back and forth with Maria, trying to name our son while we were in this traumatic state. 

The only good news that came that day was that I was given accommodation right next to the hospital in Cots for Tots House so that I could be close to Alfie.”

MARIA: “After the worst day and night of my life, I pushed myself to get up and travel to Bristol. I had been without my baby for more than 24 hours, so I had a lot of adrenaline. 

Kyle took me to see Alfie in St Michael’s NICU. There were so many wires and machines beeping.  

In normal circumstances, you can look after your baby. You feed them and change them. I couldn’t do any of that. I couldn’t even pick Alfie up; I just had to stand and look at him. As a Catholic, I went to see a priest and asked for Alfie to be blessed. 

I felt robbed of being able to care for my baby in the way I should have done. Instead, machines and drugs were keeping him alive. It’s a pain that really can’t be described. 

Maria, Alfie’s mum

All the NICU staff explained Alfie’s condition clearly to us. We soon knew the only way to help him was through an operation. He needed to get stronger and come off most of his medication. 

We have so many sacred and happy memories from NICU, but if we had to pick just one favourite, it would be when Alfie was nine days old, and we got to hold him for the first time.

At ten days old, Alfie went for his operation and came back looking worse than before. His heart rate was so high that we were scared for his life, but he gradually became more stable. 

As time went on, we were able to get more involved with his nappy changes and washing him. He eventually moved from NICU to the High Dependency Unit (HDU) in Bristol Children’s Hospital, where I could get him out of bed more, hold him and do his feeds, which made me feel more like a mum.  

Seven weeks after Alfie was born, we were allowed to go home. The day we left was very emotional. We were excited to take Alfie home, but we were also scared of anything happening that would mean he needed to go back into hospital. 

A year and a half later, Alfie had something called abdominal adhesions. These adhesions led to his intestines being obstructed, making it more difficult for food to move through his body. He became very sick and needed to return to Bristol Children’s Hospital for surgery. Alfie was very lucky to get the same surgeon, and this gave us immediate relief because it was someone we knew and trusted. 

Alfie is now nearly nine. Along the way, he’s taken a little longer to reach milestones than other children, but he’s not been admitted to hospital since he was 18 months old. He’s a wonderful, caring and happy boy. There is little to no chance of anything related to his birth affecting his health, and he lives a fully normal life. 

He often looks at pictures of his time in NICU, and he has some special items that he treasures from his time there. As he got older, he started to ask more and more questions about his stay in hospital. 

We have a medal from when his auntie ran the Great Bristol 10k for Cots for Tots just a few months after he was born. The following year, my sister and I ran the 10k again. As a family, we’ve raised funds at Alfie’s christening, a coffee morning and a family soft play event. Alfie wanted to know where the money we raised went and what it’s used for.

*Baby Alfie cheering on his auntie at the Bristol 10k.*

After learning about Cots for Tots, Alfie said if he couldn’t go in person to visit NICU and the charity, then he would like to raise money and send it in the post! Alfie’s favourite thing to do is talk, so he decided to do a sponsored silence. He was so excited, and we set a date and told our family, who donated generously. 

Some people might think a sponsored silence is easy, but it’s impossible for Alfie to go more than five minutes without talking. The day of the sponsored silence, Alfie was equipped with a pen and paper so he could communicate. Two hours into his challenge, he had tears running down his cheeks and he wrote on the paper asking if he could stop. 

I spoke to him about how well he was doing, how amazing he is, and how he only had to stay silent for a short time. By that time, more donations and messages of support from our families were coming in, so Alfie decided to continue. 

After six hours, we told Alfie he had done it. The expression and joy from his little face with a comment of ‘I have helped loads of babies’ was such a proud moment for us. It showed us that he’s now old enough to understand what we all went through, and he wants to give something back to NICU.   

Alfie wanted to meet his surgeon and visit NICU and Cots for Tots House. We didn’t even know if it would be possible, but nine years after Alfie was born, we returned as a family of four. It was very emotional, but it was really nice for Alfie to see where we stayed and see what the money he raised is going towards. We loved seeing all the improvements that had been made to the house and hearing about the plans for The Grand Appeal’s Patient Hotel, which other families will benefit from.  

Cots for Tots House made our lives so much easier. We were just across the road from Alfie.

Staying that close to him helped us dramatically. We had our own room and all the facilities we needed to feel as much at home as possible. I don’t know how we would have managed if we weren’t able to stay there.  

Maria, Alfie’s mum

A number of our family members donate regularly to Cots for Tots. We all feel like we will forever be giving what we can to the charity because of how important NICU and Cots for Tots are. 

Our experience on NICU has taught us to take things one day at a time during difficult periods. If such a tiny baby can go through so much trauma and have such a hard start to life, and yet become the happiest boy ever, then anything is possible.”