'Having four other children at home I felt torn' - Helen's story

Helen's Story Hero

Having older children at home can be difficult when your baby is in neonatal care. Helen shares her experience.

During my pregnancy I was the healthiest I had been for years. Everything was running smoothly and I couldn't have wished for better.

In week 26, all of that changed. I began having tightening pains but I put them down to Braxton Hicks and so did the staff at our local hospital.

Three days later, I had a mucus discharge and the tightening pains were still there. I was advised to go into hospital and get checked over. It was then that worry began to set in for me and my now husband.

We had four children already – one of whom was born at 29 weeks. Our first experience with prematurity was a very smooth ride with no bad days or long term complications. We discussed the prospect of having another premmie and thought we knew what to expect if it was to happen again. How wrong we were.

Evie was born at 27 weeks, weighing 2lb 4oz. Within the first 48 hours we were told she had a bleed on the brain and would need to be transferred. The nearest place that could take her was Hull Royal Infirmary which was approximately a 50 minute drive away.

I wasn't allowed to travel with Evie but we were assured she was in safe hands and they would let us know when she arrived at the new hospital. True to their word, the phone soon rang and I was told Evie was already settling into the new ward.

Within hours my phone buzzed again and our hearts sank. My husband was asked to travel to the new hospital to be with Evie. They told him that it was unlikely our little girl would survive the night because her bleed had progressed.

Having four other children at home and feeling torn, scared and not fully comprehending what was happening was devastating.

Evie’s bleed was critical and she probably wouldn’t survive. She had a Grade-3 Intraventricular haemorrhage (IVH) on one side of the brain and a Grade-4 on the other. I’d never wish the feeling of preparing yourself for the worst on anyone. But somehow, Evie fought on and began to recover.

After a little over two weeks we were transferred back to our local hospital. This made things so much more manageable for our whole family. We could visit during school hours, knew the staff and felt more relaxed. We were comfortable knowing that our hospital was a Grade-2 and so we felt this must mean that Evie was out of the woods.

Then Evie had another bad day. My husband and I had been at the hospital all day and had only been home around an hour when I told him that I had an awful feeling in my gut something was wrong.

To put my mind at ease, my husband rang the hospital to check on Evie and he was asked to come back in. Evie needed to be transferred out again. The doctors thought that she might have necrotising enterocolitis (NEC).

The third hospital was only a half an hour journey away from home which we saw as a positive. We kept telling ourselves that we had gotten through worse than this. After two weeks, our little miracle was making progress and was transferred back to the hospital where I’d given birth.

We had many bad days on the neonatal unit and I suffered bad anxiety. Looking back on it all I can see that I – like so many other premmie mothers - blamed myself for what was happening to my daughter. I felt guilty for giving birth early and like everything she was going through was all my fault. There were days when I would freeze going into the unit or have a panic attack if I did get through the doors. Not being able to face being on the unit at times made me feel like the worst mum ever.

Having other children at home meant split shifts for me and Evie’s dad. He would stay at the hospital for a few nights and then we would swap - this way our other children’s routine wasn’t disrupted too much. We couldn’t have asked for better support from family and the staff at all three neonatal units we attended, especially knowing we couldn’t always be there.

When we were finally discharged, we had spent a total of nine weeks at three hospitals. Our perfect baby had a long way to go but knowing she had already come so far, we believed she could do anything.

Taking Evie home on oxygen was the next challenge to overcome. Moving from room to room in the house was a job in itself. The other children were brilliant - they would alert us if she knocked her cannulas out and they treated her the same as any baby.

Twenty months on - and a lot of complications and disabilities along the way – we’re doing really well. Due to being born prematurely and the complications which occurred, Evie has Cerebral Palsy, chronic lung disease, hearing loss in both ears and is fed via a PEG feeding tube because it is unsafe for her to swallow.

We have physio weekly but Evie doesn't always cooperate. Hearing her cry and scream is probably the hardest part. We have come to believe that even though she is upset at the time, in the long run it’s the best thing for her and her independence.

There have been countless appointments and hospital visits but our perfect little lady defied all odds and continues to shock us all. Evie enjoys nothing more than playing with her siblings and looking at books. We are truly blessed to have had our little premmie.

Looking back, we had a rough ride but it has made us so much stronger as a family.

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