Billie’s Story

Billie’s mother shares her story of beautiful Billie who died from Enterovirus only 11 days after birth. She shares how her daughter died and how she survives after Billie’s death, including what drives her to keep going.

The pregnancy

Overall, my pregnancy with Billie went by pretty quickly and with no complications.

Around 38 weeks, our almost 2 year old daughter Aubrey got sick. She vomited twice and had a temperature for about 24 hours but was back to normal by the end of the weekend. Over the next few days, I wasn’t feeling well but put it down to the fact that I was 39 weeks pregnant.

I had a headache which then turned into a migraine. I spent most of the day in bed and we called the hospital to see if they thought I should come in to be checked. They found I was dehydrated and gave me fluids while monitoring the baby. A couple of hours later, I was sent home feeling a bit better.

Emergency c-section

The following day, my obstetrician called to ask me to come back in for more monitoring. After a short time, she said she felt we needed to get the baby out that day. The heart wasn’t doing what it should be doing, and the baby appeared to be in distress. Around 4pm that day, our beautiful daughter Billie was born. She came out screaming, and I was so relieved that she was ok. She was bigger than Aubrey, but had lots of dark hair like her sister.

First signs

On that first night, she had a low temperature so I spent the night cuddling her to help bring it up. She seemed to constantly want to feed and be on me. I figured that my supply wasn’t quite there yet, and just kept trying. On the day we were discharged, there were quite a few comments made about how yellow Billie was. I knew she was jaundiced (as Aubrey had been) but the paediatrician had checked her and said she was ok to come home.

The following 48 hours were hard. Billie still wasn’t feeding (or sleeping) well. We ended up buying some formula, as we were worried about her becoming dehydrated. When the nurse arrived for a check-up, she immediately decided that Billie needed to be readmitted to the hospital. She had lost too much weight, and was very jaundiced. I remember crying the whole time, I couldn’t believe I had been starving my baby to the point that she needed to go to the hospital.

We were met at the hospital by the on call paediatrician. He explained that Billie needed to be put under lights for her jaundice, and get her feeding up.

I remember mentioning the circumstances around her emergency delivery due to her distress, questioning if any of that could have anything to do with what was happening now. It was brushed aside, and put down to feeding.

It was so awful to see my little girl in special care. Not long after being given some formula, I went to change her nappy and found she had explosive diarrhoea. I asked the nurse if that was normal, and she told me that it was just her tummy not used to the formula.

Running tests

That night, I stayed at the hospital doing Billie’s feeds. I spent the next day with her, as they continued monitoring her, giving her formula, and keeping her under the lights. I went home that night, and received a call around 1am. Billie had developed a temperature, and together with her diarrhoea, they now thought that she might have a virus. He said they had run some tests, and would be getting some results the following day. First thing the next morning, on our way back to the hospital, the next paediatrician contacted me. He explained that there had been a surprising result from one of Billie’s tests- meningitis. I didn’t know a lot about it, but I knew it wasn’t good. We were told that more tests were being done to determine if it was viral or bacterial. In the meantime, Billie would be started on antibiotics.

A diagnosis

We arrived back at the hospital as they were attempting to put the cannula in for the antibiotics. It was so horrible to watch, I just wanted to pick her up and cuddle her. Over the next 24 hours she started to improve. She was feeding well, and her colour was looking much better. By the following day, the paediatrician who was present at Billie’s delivery and had discharged her was back on. That afternoon, more test results came back- enterovirus.

It was explained to me that this was ‘the best outcome’ and that they knew this virus well. She mentioned that ‘sometimes it can go to the heart, but Billie seems fine’. The whole time, I had been trying to get through each day and I finally felt like I could see the light at the end of the tunnel.

Declining health

A couple of days later, we were meant to bring Billie home. The paediatrician had been to check on her earlier in the morning, and had given her the all clear to go home. We spoke with the paediatrician over the phone and asked all of the questions that we had, including signs to watch out for, as we were scared about her becoming unwell again. We were reassured to just watch her feeding, temperature, and colour, but that we didn’t need to be overly cautious.

Knowing what I now know about enterovirus, I can’t believe these signs weren’t taken more seriously.

After this conversation, I tried to give Billie her bottle. Throughout her time in special care, all of the nurses had commented on what a great feeder she was. That morning, she really struggled to drink the whole bottle. Once she had eventually finished it, I sat her up to burp her, and she vomited the entire lot back up. We told the nurse and she contacted the paediatrician to let her know what had happened. The response was that we could still take her home since ‘babies vomit’. We made the decision to leave her in the hospital a little longer until we were confident she was ok. As we were leaving, Davie pointed out to the nurse that Billie was looking a little grey. She said she would check her over.

We went back home and around lunchtime, the paediatrician called to let me know that Billie had vomited again at her next feed, and that they were deferring discharge. We were told that the nurses would keep an eye on her, and have the paediatrician on call come and take a look at her if needed. Knowing what I now know about enterovirus, I can’t believe these signs weren’t taken more seriously.

The emergency call

I arrived back at the hospital around 2.30pm. I asked how she was, and the nurse told me she was struggling a little. They were going to run some more tests to see if something had been missed. She also told me that they were going to put in a nasogastric tube for her feeding, to take some of the stress off her body. I was told to have a little cuddle before they placed the tube and hooked her back up to the monitors.

You have every right to know exactly what is going on, and that everything possible is being done for your child.

Until this point, I had been trying to hold it all together. Knowing that we were now taking backwards steps, it all caught up with me. I sat and cuddled her, and just couldn’t stop crying. Eventually, it was time for me to give her to the nurse for the nasogastric tube. As I sat there, the nurse attempted to hook her back up to the monitors. Next thing I knew, she was hitting the emergency button. I asked what was going on, and she said she needed more hands in there as she wasn’t getting what she needed. Suddenly the room started to fill with people. They quickly moved Billie to another part of the nursery, and as they did I saw the awful grey colour that she was. They told me that I could go over to be with her but I couldn’t move from where I was.

Everything from that point is a blur.

The paediatrician called and said that it looked like the virus had gone to Billie’s heart, and that she would need to be transferred since they didn’t have the medication that would be needed. By the time Davie arrived, they were doing heart compressions on her. I couldn’t see, and he didn’t tell me until later. He said he knew then that we were in trouble. We were told that a team from the children’s hospital was on their way down. That gave me hope. I kept telling myself that once they were there, everything would be ok.

The most vivid memory I have is of one of the paediatricians coming to speak to us, a couple of hours after the emergency call was first made. I will never forget when he told us ‘ it is looking likely that Billie is going to pass away.

‘It is looking likely that Billie is going to pass away’.

I just kept saying no, over and over again. Then I got really angry, and asked how this could have happened. How was it able to get this bad? Once the team from the children’s hospital arrived, they worked to try and stabilise her in order to transfer her. They decided that they could try one last medication on her. We sat with her while they tried this. After a while, it was explained to us that the medication wasn’t working. They said that they could still take her to the children’s hospital, but there wasn’t much more they could do and they weren’t confident she would even survive the transfer.

Billie’s final hours

We decided that Billie had been through enough. We wanted the last part of her life to be as peaceful as possible. The hospital set us up in a room, gave Billie morphine, and handed her to me in the bed. We spent the next few hours cuddling her, and telling her how much we loved her. She was so strong, and held on for so long.

We wanted the last part of her life to be as peaceful as possible.

I kept thinking that there must be something else they can do, she’s holding on, we can’t just do nothing while she’s still here and alive. Right up until the moment the nurse checked her, and gave a little nod of her head to let us know she was gone, I kept hoping that they were wrong and she was going to survive. No parent should ever have to watch their child die, but I’m so glad that we were there with her to cuddle her.

After

They now believe that Aubrey had had enterovirus, and I had then contracted it. It was then passed on to Billie in utero. The enterovirus ultimately went to Billie’s heart, causing myocarditis.

No parent should ever have to watch their child die, but I’m so glad that we were there with her to cuddle her.

Immediately after Billie died, I started searching for others who had gone through this. I found a lot of people on social media who gave me hope that I could survive it. As awful as it is that so many others experience child loss, it helps to know we’re not alone. I’ve also learnt to not worry if people think that I’m selfish for making decisions that are right for me, and I say no to things that I don’t want to do. Writing has helped me a lot, getting it out of my head instead of keeping it in.

Remembering Billie

I’ve found that grief changes over time. Things that are ‘triggering’ feel different depending on the day. In those first days and weeks, it took everything I had to get through each day. I couldn’t face anyone and only wanted to be with Davie and Aubrey. I took it very slowly when I started seeing people again, and said no to seeing people when I didn’t feel up to it. I saw a counsellor about a month or two after Billie’s death, and started seeing a psychologist when I fell pregnant again. She was amazing, and it was the best thing that I did.

While I will never be the same person as I was before Billie’s death, I am surviving it. You do survive it.

The grief never goes away, but it’s not as raw now. The days where it feels completely overwhelming get fewer, and you learn that you can be happy again. It’s a different kind of happiness, but it’s still there.

With each year, what I feel strong enough to do on Billie’s birthday changes. We call peonies Billie’s flowers, since she was born and died in November. We always have them in the house throughout November.

I was so angry after Billie’s death. I have now channelled that anger into fundraising for enterovirus research and awareness. I want people to know Billie and her story, and hopefully help other families. Her life was short but she’ll always be an important part of our family.

My advice to anyone navigating the medical system is to keep questioning. Even when you’re exhausted, ask all the questions until you feel confident. If you have the slightest feeling that things aren’t ok, or that not enough is being done, keep pushing

Even when you’re exhausted, ask all the questions until you feel confident. If you have the slightest feeling that things aren’t ok, or that not enough is being done, keep pushing. You have every right to know exactly what is going on, and that everything possible is being done for your child.

Candice is Billie’s mother. She lives in Ocean Grove with her family and children Aubrey, Harlow and Bodhi. You can follow her story and learn more about enterovirus and how to support her cause on Instagram @_all_for_billie and @candice_b_84, and Facebook (All for Billie). To make a donation, visit https://candice-appeal.raisely.com/