Olivia

I came back home to live with my parents while I started a nursing course. Then, I found I was pregnant.

I got polyhydramnious (extra fluid around the baby) so I was very big. I had four scans but they didn’t pick up anything. When my waters broke there was loads of fluid, I had to rush to the toilet and sit there! The labour went very smoothly, I didn’t even have any pain relief! Olivia was born at about 2 am.

I held Olivia for a little while (I didn’t know it was the last time I’d hold her for a week or I’d have held her for longer!) then gave her over to my mum. She had a very rattly chest which you could feel as you held her and my mum and midwife just looked at each other. They had guessed she had Down syndrome.

The registrar came, tried to suction her but couldn’t get the tube down, he said that the consultant paediatrician would talk to me in the morning.

Olivia went to the neonatal intensive care unit while I had a sleep. At 8am the paediatrician and my midwife came and talked to me and mum. He said that two things were wrong with Olivia, she had Down syndrome and she had a TOF, a tracheo-oesophagael fistula. We would need to fly to Wellington for an operation.

A registrar and nurse arrived and got her ready to travel and in passing the registrar said “and you know she’s got bilateral cataracts?” So that was how I discovered she had cataracts too.

When I got to Wellington neo-nates, it was full-on. There were so many people in my face saying “Sign this. Sign that. Can I have this? Can I have that?” I’d stopped caring about how I felt, I just wanted to be with my baby.

They did a heart echo and found she had a VSD and ASD. The surgeon explained some of the problems babies with Down syndrome can have and I began to think Olivia had them all! He was great though, very jokey and happy so I didn’t have any worries about the surgery.

During her four-hour surgery, we went and developed some photos just to get out of the hospital. The shop assistant thought I shouldn’t be out so soon after having a baby. Then I realised how different all this was to usual!

I phoned a few friends to tell them what was happening but it just made me cry. I found it was easier for them to find out from other people than to tell them myself.

After the operation, Olivia was kept paralysed and on a ventilator for two days so that she wouldn’t disturb the stiches. It was hard seeing her like that. She had a great big chest drain in too, which meant I couldn’t pick her up.

She was by far the biggest baby in intensive care; the others were tiny premature babies. This made it hard for me to relate to the other mums. I felt I was on my own.

The next nine weeks were difficult as she’d be moved out of intensive care then get worse and go back. I lived in the ward and my parents visited each weekend.

Easter Sunday was a big celebration for Olivia; she had her long-line out. (A long-line is a big drip that supplies energy and nutrients to babies who can’t feed by mouth.) Finally I could carry her around not attached to any machine.

Because Olivia had so many health problems the Down syndrome took second place and I didn’t really think about it until she was a few weeks old. The other mums were talking about their premature babies one day going out shopping, and it hit me how different Olivia was. I began to think, “Is Olivia going to do these things? When other children go to the shopping mall are they going to want to take her along? Is she going to be the left-out kid?” I left that meeting crying.

Olivia is four and a half months old now and at home. She’s still learning to feed and has a naso-gastric tube. She’s had her cataracts taken out and wears contact lenses that have to be changed each month. My life revolves totally around her, but one day I’ll get back to my nursing training. For now, I just get on with each day.