“I read through people’s stories on the Bliss website and felt a little bit of relief.” – Heather’s story

My son Teddy was due on 12th June 2022 and arrived at 27+4 weeks gestation on 17th March – St Patrick’s Day!

I had some bleeding at around 25 weeks and was kept in Ormskirk Hospital, where I was hoping to have my baby, for 3 days and given steroid injections. I was relieved and anxious about being discharged, and the days and weeks that followed were so up and down.

At 26 weeks gestation, I felt what I thought was another bleed and went into the hospital to get checked. They confirmed my waters had broken and kept me in to be monitored. After a stressful and mostly sleepless night, I woke up to the news that I was being transferred so I could be at a level three neonatal unit. I was informed this would be anywhere with a bed, so it could be miles from home. I was scared, but eventually was told there was a bed for me and my baby at Liverpool Women’s Hospital. I was transferred later that day.

Some of the midwives who cared for me during this time were so comforting and warm. At other times, I felt forgotten. Each time they checked the baby’s heartbeat it was strong, but I was leaking huge amounts of fluid, some of which contained blood. I was not in pain, so the whole thing felt very confusing.

The doctors saw me daily and reassured me that all was well, but I felt so anxious that I might lose my baby. I was desperate for answers on why this was happening, whether I could do anything to keep the baby inside and safe, but there was no reason and nothing I could do.

I blamed myself. I thought of what I might have done to cause this. I continued to read my hypnobirthing book in the hospital and hoped for the best. I told myself to stay positive even though I was terrified. The neonatal team came by to talk to me and give some advice on what to expect. This was so reassuring!

I felt better in knowing that I would be involved in my baby’s care if they were born prematurely. They told me that at 28 weeks, there was the same chances of survival as when the baby is full term. I told myself I needed to get to 28 weeks and was counting down each day. They also told me about Bliss, which I researched immediately after. I read through people’s stories and felt a little bit of relief.

Nine days after being transferred to Liverpool Women’s, the 16th March, I started to feel pain in my stomach. I was checked over and given some pain relief, and the baby’s heart rate was fine. Later that day the pain intensified, and my partner came to be with me. I was transferred to the delivery unit where the pain came and went, which I thought may be contractions. I was examined and scanned, and told there was only a small pocket of water left around the baby. I was told that I would be scanned the following day and may need a c section if the waters had reduced any further.

The thought of a c section scared me, and the thought of having my baby this soon was still so surreal. I barely had a bump! The following day, the pain had disappeared. I vomited and passed large amounts of blood and tissue. I was transferred back to the maternity base in the afternoon and sent my partner home as he had been up most of the night with me.

Not even an hour had passed, and the pain came back. I was given more pain relief which didn’t even touch the sides! The pain got worse and worse, and it was a long time before a doctor could get to me. I text my Mum to come in as I couldn’t handle the pain alone and my partner had just left the hospital. I remember sweating, pacing the floor and trying any and every position to ease the pain. It didn’t stop. I thought if this is labour, then I can’t do this.

My mum arrived and before she could sit down, the doctors whisked me off to be examined. I don’t remember much of this time because it was all a blur of pain and worry. I felt like my baby and I might die. I do remember the blood because there was a lot of it. I could feel it pouring out. My mum later told me that when I was examined, they could feel my placenta and my baby’s hand on its way out.

I was taken to theatre and the pain finally stopped after a spinal. I remember feeling cold and shaking, with my mum holding my hand. My partner arrived, and my baby was born. My midwife showed me a picture on an iPad, and they attempted to show me him in his incubator as they took him away to the NICU.

I was taken to recovery, and a doctor came to tell me that my baby was born in a ‘very poor condition’ and tonight would be crucial. He needed CPR at birth and didn’t breathe for the first 7 minutes. They talked about the importance of breast milk for my baby, and managed to get some from me in a syringe. I was given some photos and a teddy bear with my baby’s heartbeat recorded in it. This was everything to me!

Looking back now, he looked so poorly in those photos but I still showed everyone. I felt so delirious in those first few days. It was like adrenaline hit me. I look back now and feel immense guilt for not instantly realising how seriously sick my baby was.

Teddy spent 88 days in neonatal care. The majority of this in Liverpool Women’s, and the last few weeks in Ormskirk. He was transferred when he was well enough.

My neonatal experience was a rollercoaster of emotions. So much pride for every milestone- going up half a millilitre in feeds, going from being intubated to hi-flow, moving from an incubator to a cot. So much fear, worry, and heart wrenching moments that are hard to forget too.

Teddy had a minor bleed on the brain that self-corrected. He had stage one ROP, which also self-corrected. The eye tests were maybe the worst thing I watched him go through! Teddy’s main issue was reflux, which caused him to desat and bradycardia after almost every feed. These were the scariest moments – I felt every time like I might lose him. He grew and got stronger each and every day. But each day could turn from good to bad in a flash.

The nurses who cared for him were incredible. They not only cared for Teddy, but for me too. They made me feel empowered by teaching me how to care for him. They gave me confidence in handling such a tiny and fragile baby. They are my heroes and I could never thank them enough for all they did for my boy. I was supported with pumping and feeding, which luckily came very naturally to me. This was the one thing I felt like I could do that really helped him.

Skin to skin was my favourite part of the day. I would sit for 2-3 hours at a time with him on my chest. It made me so happy. While in Liverpool Women’s, I saw a counsellor on the unit who would come around to chat. I loved that this was at Teddy’s bedside so I didn’t have to leave him. He was great, and I was sad when Teddy eventually got transferred.

When we got to Ormskirk, the change knocked me. I eventually got used to things and felt more comfortable and confident. I was offered peer support from a Mum who was on the unit a couple of years before. She was fantastic. Talking to her made me feel like everything I felt was normal. It’s so nice when you can relate to someone who has been through what you have.

Teddy is now two and a half and doing amazingly. He is tiny for his age but that never stops him. He is confident and happy. He talks so much! Everyone is impressed by his strength and all he has overcome. He makes me so unbelievably proud.

The best advice I would give to other NICU parents is to seek out others who can understand. Remember that are not alone, be the advocate for your baby, and do your research. The more I knew about everything Teddy was going through, the more confident I felt in being able to speak for him and make decisions. I could contribute on ward rounds with doctors, and I truly felt like I knew what was best for him. I kept a diary of every procedure and wrote a little note about anything significant that happened daily. This helped give me a sense of control, and nothing was forgotten when it came to his care.