Evie’s Story

Evie’s Story

Pregnancy and Birth

I was pregnant with twins and overall had a normal pregnancy. At about 32 weeks I developed obstetric cholestasis (OC) which is a liver condition that causes severe itching. That was unpleasant but the doctors were aware of it and treating me.

I was able to carry the twins to full term pregnancy and then went into spontaneous labour. At first everything seemed to be fine. After about 4 ½ hours they broke my water because one of the twins, Evie, heartbeat was slowing. The feeling was that everything was OK so my husband left to go get a coffee.

Then Evie’s heartbeat went. Alarms went off and everyone came running in, the consultant was there immediately. They said they would have to do an emergency caesarean. There wasn’t going to be enough time to give me an epidural so they would have to give me a general anaesthetic. When everything started to go wrong I was on my own. I just wanted the babies out and to make sure they were OK.

I remember a member of staff pulling my bed and she was still in her coat and had a bag on her shoulder, at this point I knew it was a serious emergency as everyone was moving quickly to get the babies. I just lay there; there was no time to ask any questions.

Having a general anaesthetic was not the best experience but I knew I needed to be compliant to get the babies out. With a general anaesthetic my husband couldn’t be in the room either.

They delivered Evie first. She was completely flat, she had no APGAR. They managed to get a heart beat after 3 ½ minutes took until 4 ½ minutes before her heart was beating at 100 beats per minute. Her first gasp was noted at 13 minutes.

I didn’t know what was happening as I was under the general anaesthetic and then unwell myself. I was in recovery for a while as I lost half my body’s blood. After about 3 hours I came out of recovery after having a blood transfusion.

Dad’s experience

My husband had gone for coffee and when he came back they rushed to prepare him for the caesarean then things took a turn, they said no he couldn’t come in and was left to wait in the delivery room. He didn’t really know what was happening. Later they came out with twin 2, Hannah and went back into the operating theatre he didn’t even know if the other baby was a boy or girl.

Later they came out to say that twin 1 Evie, was not well and that I (his wife) was not well. He was left with a screaming baby and really didn’t know what was going on. They offered to get him a bottle but he was afraid to feed her as he knew I wanted to breast feed and didn’t want to do the wrong thing. Later the neonatologists spoke to him about treating our Evie. He didn’t want to make a decision without me so they waited for me to come around. At one point he was very scared, he was not sure if I and our other baby would make it and feared that he would be going home with just Hannah.

The First Few days

I remember when I did come round I saw my husband holding Hannah (twin 2) and I asked him where our other baby was. I wasn’t hugely alarmed as he seemed calm. He said she was poorly and was in Neonatal Intensive Care (NICU). 

About 4 or 5 hours after she was born, two paediatricians came to see us to tell us how she was doing. She was classed as having moderate hypoxic ischaemic encephalopathy (HIE). They asked us if we would like to participate in a trial to cool our baby. We asked a lot of questions in particular if it was their baby what they would do. We were very much guided by them and agreed to have our baby cooled as part of the trial.

I started to realise she was more poorly than I first thought. At this point I still hadn’t seen her and I was desperate to. After we consented to cool her we were told we could see her after the treatment was started. They started to cool her at about 5 hours after birth.

At about 9 hours we were able to see her. She was very poorly. She was pale, on a ventilator, fitting and jittery. The noise and alarms were traumatic. She was surrounded by tiny babies and she was 7lb 8oz and didn’t look like she belonged there.

We stayed in the hospital in the days after her birth. The first few days we were numb. We couldn’t eat, we even felt physically sick. We were on auto pilot. We would visit her regularly but I hated to see her especially when she was fitting. I really wanted to see her but not like that. Sometimes I would send my husband to see her because I couldn’t bear to see her like that.

When she was one or two days old the medical team told us more about the treatment they were giving her. We were told our baby was very poorly. They said it was unlikely she was going to die but could have a disability as she grew up. We found it helpful that they were honest with us and were able to tell us this. In these early days we really lived for the next 24 hours.

She was four days old when we first held her. She was not being cooled any longer but was still connected to several machines. I wanted to hold her but I was worried about her treatment and didn’t want to stop anything that was helping her survive. We were encouraged to give her a dummy to encourage her to suck but Evie would just lick at it as she was too weak to even suck. This worried me but the staff said that that was normal and I shouldn’t be alarmed.

As Evie started to improve, she was moved into the Special Care Baby Unit (SCBU). We didn’t see as much of her consultant and we felt a bit lost. It was probably right that we didn’t see the consultant as frequently as that meant our baby was improving; we just found it more difficult as we had confidence in her and preferred to hear things from her. The nurses were still very good about updating us.

When we were in SCBU, they said I could try and feed her to see how she responded. I tried to feed her and she latched on straight away. One on the nurses commented that this was a really good sign, it was the first time I started to think that maybe things were going to be OK.

A few days before we came home Evie had her newborn hearing test and she failed the test. I remember being told by one of the nurses. My optimism immediately went and I was sure if she had hearing loss there was a good chance she would have other disabilities. It was a real rollercoaster of emotions.

Overall we had a positive experience whilst Evie was in the hospital. The consultant often repeated everything in terms of the treatment they were doing and how things were progressing we found this very helpful. We did nappy changes and were encouraged to hold her hand, talk and read to her. She was generally looked after by the same nurse we felt this was really helpful as the nurse knew our baby and us. We also had the same consultant, we really looked to our consultant and trusted her to tell us how the treatment was progressing; she was honest about the good and bad news. In terms of her treatment we couldn’t fault how well they cared for Evie; I felt there was nothing more that could have been done for her.

Going home and the first 2 Years

Whilst we were in the hospital we had a lot of small milestones moving from NICU to SCBU and then going home. After coming home the reality of the fact that she might be brain damaged started to really sink in.

When we brought her home I had a continual fear about how she would develop and what sort of damage could have been done to her. I did a lot of reading up to find out what to look out for and I was constantly looking for signs. It’s difficult because if she didn’t have such a scary start I wouldn’t be looking for signs.

When Evie was little she held her head to one side. I was worried and had convinced myself that she had cerebral palsy because I had read this could be a sign. When I spoke to the doctors they said it was probably because of the way she was laying inside of the womb. She also held her tongue out and dribbled her milk all these little things made me think something was wrong. Because of her start in life I constantly worried about the future. We had concerns about the whole family and how we would manage. This was a very difficult time for us and I would often cry myself to sleep. I kept blaming myself even though I knew there was nothing I could have done to prevent what had happened.

After being home for about three weeks Evie started to see a physiotherapist. This was extremely useful. When she first started they found she had increased tone in her lower limbs which again made me think she had cerebral palsy but after we went back the physiotherapist had reinforced that all was OK. They couldn’t say it would always be OK but that Evie was progressing. The physiotherapist gave me exercise to do with Evie; this was helpful for our baby and for me to be working with her. We continued to see the physiotherapist until Evie was walking. They were always really positive and said they didn’t have any concerns and this was really helpful for us as a family.

I then had other signs that things were progressing well. Evie smiled, rolled over, sat up and walked earlier than the general milestones (in fact earlier than her twin!) All of these milestones were a relief to us particularly as the MRI she had as a baby indicated that it would be these sorts of functions that would be affected if at all.

There has always been a little nagging at the back of my head. In my heart I know things will be OK but at appointments with doctors and the physiotherapist I always needed reassurance. The medical team were always very kind and good about saying that we could call at any time or bring in any concerns we had. Whilst we didn’t need to it was useful knowing that we could and that they were so willing to help us.

When Evie was 2 years old the consultant caring for Evie did a developmental assessment on her. She did really well and on some things was more advanced than her age! That was a huge relief for us. It doesn’t completely stop us from looking for signs and thinking what if? I think we might always do that but it was good to know that she is developing well for her age.

Looking back I feel slightly robbed of these precious years with my daughters, I was so focussed on seeing whether Evie would reach her next milestone. Now Evie is a happy, bright little girl and is more than capable of keeping up with her twin sister! She has a moderate hearing loss but you wouldn’t know. Her speech is fantastic and is a real chatterbox!!