Ava’s Story

Ava’s Story


Ava was due on the 27th May 2010, but didn’t make her appearance until 2nd June.

The night I went into labour I couldn’t get comfy in bed, at 3am I tried a bath, I remembered this helping a lot when I was in labour with our daughter Freya, but it just wasn’t working this time. I woke my husband Darryl and said things were moving quickly, by 4am we called the midwife.

We had planned a homebirth this time as things had gone smoothly with our first daughter and everything was going well throughout my pregnancy. The midwife arrived shortly after 4:30am and I was 5/6cms dilated. We thought things were going well and our baby’s delivery wouldn’t be too far away. I had gas and air and by 5:30am I was told that my waters had gone and there was a slight staining of meconium. If this occurs, it is procedure that an ambulance is called to be on stand-by. We phoned someone to come and look after our daughter Freya in case things changed. Freya slept through the whole thing!

Things moved quickly and it wasn’t long before I was able to start pushing. I tried a number of positions to move the baby along but she wasn’t coming down as she should. The decision was made to transfer to hospital. However, 2 minutes into the journey I knew the baby was going to be delivered, so the ambulance stopped, emergency equipment at the ready. Instantly we knew something was not quite right, as her head emerged the cord was wrapped extremely tight around her neck, the midwife tried to un-loop it but couldn’t, so she had to cut it for the rest of Ava’s body to be delivered. Baby Ava arrived at 7:08am.

She was life-less, grey and floppy. The midwife and paramedic worked on her straight away and we arrived at the hospital within 3 minutes.

Transfer and the first few days:

Finally I was wheeled into the delivery room where Ava was being observed by many people and within a few minutes we got a very quick glance at her – a tiny face wrapped in bundles of white towels and she was taken up to the Special Care Baby Unit (SCBU).

We were given a side room on the ward and that’s where we waited for what felt like ages. At this time we had no idea of what was happening. We made phone calls and sent text messages to let everyone know that Ava had arrived.

After an agonising 3 hour wait, a consultant finally arrived and gave us the news that completely turned our world upside down. We were told that Ava was very poorly and had shown signs of fitting so needed specialist treatment at a nearby hospital. They were getting her ready for transport so we were allowed to go see her before she left. I remember the consultant saying that he was sorry, that Ava was very poorly and had that awful look on his face that said it all.

We went to the SCBU and saw Ava lying in an incubator with tubes and wires everywhere. We got to touch her but felt frightened by all the wires. We took some photos and let the team start the transfer. We didn’t have a clue at this stage what exactly had happened to Ava or how seriously ill she was.

We were given directions to the hospital she was going to be transferred to but before going there we wanted to go home to explain to Freya that her baby sister was born, but a little poorly. We explained that she was going to spend the day with family; she was too young to understand what was happening.

When we arrived at the hospital Neonatal Intensive Care Unit (NICU) we were taken straight to Ava, she seemed so big compared to all the tiny preemies there. They gave us a leaflet about birth asphyxia and showed us to our parent bedroom. We had no idea what was in store for us!

Ava was placed on a specialist cooling bed which cooled her body down to 33 degrees; we were told that studies carried out had shown this prevented any further brain damage from taking place. This lasted 72 hours and at the same time Ava had wires put into her head to measure the brain activity. Initial results were not good and Ava continued to show signs of seizures, she was on lots of different meds for various things. The first day was such a blur, our baby, who had been perfectly baking away for 9 months, suddenly was unlikely to see the next day. To be honest we didn’t have a clue what it all meant, happy, shocked, confused, angry are just some of the ways we felt that day.

By day 3 Ava had been off the ventilator as she was breathing well by herself; however after a seizure episode Ava had stopped breathing so was re-ventilated. It was awful, I spent most of my time sitting next to her bed watching her, watching the monitors, watching the urine bag (that was a huge thing as Ava wasn’t passing urine so they said her kidneys had probably stopped working and in that case so had many of her other organs).

End of life decisions:

EEG results had not changed and due to her deteriorating condition the doctors made a decision to complete an MRI at an earlier stage. This was the final puzzle piece to her condition and prognoses. We discovered Ava had severe grade 3 HIE.

We spent many a times being taken into the wards quiet room where the doctors explained that Ava’s outlook was not very good and that if she were to survive she would be totally reliant on care. She would basically just have enough brain function to keep her heart beating and lungs breathing. The doctor’s had done all that they could do in regards to treating our baby, she wasn’t showing any signs of improvement so end of life care was now a decision we faced. We were devastated beyond belief. Why was this happening to us? What had we done to deserve this?

We were introduced to East Anglia’s Children’s Hospice (EACH) team and talked about options for end of life. Who’d have thought there were so many options about where and when a baby should die? As parents we had never considered we would have to be making these choices about our new baby.

We sat down with Freya and explained that Ava’s medicines were not working and that she was going to become an angel baby, we were going to choose a special box to post Ava into the ground so that the fairies could take her up to heaven. She was so brave!

We called our close family and arranged for Ava to be blessed by the hospital chaplain. It was a lovely, short service and felt that it was what we needed to do.

The next day, day 7, exactly 1 week after Ava was born, with the clinical advice we made the heartbreaking decision to switch off Ava’s life support.

We moved into a side room not knowing what to expect, minutes, hours, days? Darryl and I wanted to be alone at the time so our family waited in our family room with Freya. Ava was taken off all the machines. We made the decision not to resuscitate and let Ava be at peace, she had been through so much in her 1st week of life.

It was weird, I can’t really describe how we felt, but we took loads of photos, from ears to toes and sat there holding her, expecting her to pass quickly, but she didn’t.

After 2 hours Darryl went and told our families that Ava was still with us. We invited them to come in small groups to hold her and spend some time alone with her with no wires and to say their goodbyes once again.

Family left around tea-time and Darryl and I kept a bedside vigil, not knowing how much longer we were going to have. Ava had surprised many people by this stage; they really didn’t know what to say to us as they strongly thought she would pass quickly. Ava was then given her first milk feed, 12mls by a nasal gastric (NG) tube. When Ava was born she had no reflexes at all, she couldn’t suck, swallow, gag or do anything else.

The following day, we got to dress her in a baby grow, it was only then that she looked how a baby should. The doctors tried to wean her off the sedation medication but Ava didn’t cope very well so they were started again. It was hard being away from Freya, from home, so we requested to be transferred back our local hospital SCBU.

Finally on day 9 we were transferred back to our local hospital. It was great to get home and put on some clean clothes, but the house felt so cold. No new baby cards or helium balloons congratulating us on our baby girls arrival; people were too frightened to send them. The nursery made up, but no baby to bring home. It was strange to be at home, it felt wrong, but I was desperate to sleep in my own bed, with Freya snuggled up between us.

The next day on SCBU we discussed again that no attempt to resuscitate should be made and the EACH team were on the phone. They visited us and Ava and carried out lots of memory work with us, footprints, hand prints etc. We were then taken on a tour of the hospice, a place we could choose for Ava to die. It was what everyone was still expecting to happen.

Over the next few days Ava was weaned off the sedation medications and did well. Again we spent many hours sitting in a tiny room watching Ava, watching the machines. Her room became a second home. We were beginning to hate every minute of our time there, at times we were made to feel in the way, visiting for family was too restrictive and at one point Ava was being fed out of date milk!

Going home and Today

Before Ava was allowed home we had to attend a multi-team meeting where we discussed who would be involved with Ava’s care once home. Then Ava was moved into a different nursery room which was a nice sign that Ava would be coming home soon. That time dragged though as doctors were apprehensive about how we would cope away from the hospital. By this time I was totally fed up of the hospital and was desperate to bring our baby girl home. It was hard work juggling Freya, school, Darryl’s work and visiting times, if anything, looking back it was exhausting!

Finally, aged 5 weeks we brought Ava home, with high calorie milk, the NG tube and anti-seizure medications. What an emotional day. The day before coming home I had to learn how to pass the NG tube; it was the first time Ava cried since she was born. It was a beautiful sound, although I felt awful as it was me who made her cry.

It was strange having her home, alone, with no medical professional around. But it was also the best feeling in the world. However we still had the ‘what’ might happen next hanging over us all the time. No-one could tell us what to expect in terms of Ava’s future, except for the fact that they expected her to be severely disabled. We still hadn’t understood really what exactly caused Ava’s troubles. We hadn’t been given any information on where to go for support. We felt totally alone, like it hadn’t happened to anyone else before.

Now 17 months on we have huge support from EACH and our families. Ava is significantly behind in her development, it’s still very much like having a newborn. Ava has a visual impairment, epilepsy, is fed via gastrostomy, she has had a Nissans Fundoplication due to severe GORD and is totally reliant on us for all her needs. Muscle tone and spasms are a big issue at the moment. We are now waiting for a wheelchair and standing frame to arrive in the near future.

It has been a challenging 17 months filled with appointments, chest infections, reflux, seizures, growth issues, lack of sleep and much more! However we count our blessings for every day we have had to share with her. Freya makes the best big sister in the world, we are very proud of her.

As a family we have been through what feels like world war 3, but we carry on the best we can and take every day as it comes. Who knows what the future will bring, but we have a determined little girl who we love very much.