“I think we said hello when we were washing our hands." – Tasha and Louise's Story

“Everything was progressing as normal with my pregnancy with Alice until 23 weeks when I noticed she’d stopped moving. I went for a precautionary scan and was told that her growth had trailed off and it was likely that I’d develop pre-eclampsia and would need to be closely monitored. It was the day before she was born at my 27-week scan when I was told that she hadn’t grown. She needed to be delivered.” 

Due to Alice’s size, Louise was told she’d have to go to a level three hospital where Alice could receive the best possible care.  

“In everything that was happening, I didn’t even realise they’d started the c-section and I remember just thinking, will she cry when she comes out?” 

“I saw her little red head wrapped in a towel and then they took her away. It was awful. I had to be taken back to recovery as I couldn’t move my legs and had to wait for someone to come and show me pictures of her.” 

Tasha didn’t see her baby Peter awake until he was two weeks old.  

“I couldn’t hold him due to the ventilation he required.  We were told that it would be touch and go, we were told this for the first week of his life; it was scary but we had to stay strong for him, it was hard to do.” 

Peter was born with severe meconium aspiration resulting in PPHN, following a difficult birth. In his first two weeks, he was transferred twice, once to Trevor Mann baby unit in Brighton and then on to Great Ormond Street Hospital as he was not making any progress in Brighton and they were concerned he would need an ECMO machine (for a heart and lung by-pass). Thankfully this wasn’t the case as he started letting go of some of the medical support. 

“Luckily we were able to stay at Ronald McDonald House whilst in Brighton and then we were offered accommodation at Great Ormond Street but after two and a half weeks, he was transferred back to our local hospital and so we had to leave him alone for the first time. It was a shock after being able to visit whenever we could; we would go in for 12 hours and then head home, eat and come back.” 

Louise agrees that the separation was one of the toughest parts of being on the unit:  

 “We weren’t able to be transferred back to our local hospital until Alice was four weeks as she had MRSA and was on antibiotics for sepsis. The first couple of weeks were really difficult as I wasn’t allowed to drive after the birth and my mum had to drive me so I could go to the hospital every day.”  

“I remember getting told off by the nurses for going in at 1am, when I should be resting,” Tasha adds, “but you just want to be there.” 

It was at East Surrey Hospital where Tasha and Louise met, but it wasn’t until the time came to go home that they really started to reach out to each other for support.  

“I think we said hello when we were washing our hands. But it was when we both got the news that our babies were going home on oxygen on the same day that we started to really talk with each other. We ended up staying in the hospital the same weekend before leaving to go home, it was the hospital’s way of making sure we were okay with the oxygen tubes and to prepare us for having our babies at home… finally ” Louise explains. 

“I had concerns about going out while Alice was still on oxygen. I hated people asking questions, and the repetition of having to explain how old she was as she still looked like a new-born.” 

Tasha felt that it was hard to explain to people why Peter was on oxygen as he was born at full term.  

“Everyone understands what a premature baby is but what happened to Peter is quite rare, and I still now do not know anyone who has heard of this happening. We were out once and someone asked me if what had happened to Peter was my fault; that was difficult to deal with.” 

“While I was in the hospital, I never felt like I was treated any differently even though there was only one other full-term baby in NICU at the time, but it felt like there was more external support for families of premature babies. I did Google a lot of stuff, but I didn’t really know where to look for support and I didn’t know if I was just being ridiculous.” 

“You do have those moments that break you. There was one day on the unit when I was told we were being moved from a corner space to the middle of the room, we had settled in the corner as I was trying to express for Peter and I just lost it. It was our last room, after being transferred, moved from room to room as Peter got better and we were so near to going home; we’d just got comfortable. I felt guilty but the staff were really understanding and supportive.” 

“That’s why it’s so important to just talk to someone about how you feel – whether someone at the hospital or online, or a friend or family member – just to know you’re not alone and your emotions are valid. Dads need to get the support too, I think they are sometimes overlooked.”  

“Even though it’s hard, it’s also important to try not to compare your baby to other children, they all grow at their own pace.” Louise adds. 

Alice and Peter are now five and attend the same school. 

Tasha says: “The experience really stays with you – even now I can’t see a children’s ambulance without bursting into tears. But whether they’re born at full term or premature and no matter how long they spend in NICU, all the little ones develop in different ways and they are all absolute miracles.”