My name is Ian and I live in Leeds with my wife Hannah, and our two children, Evelyn who is 5, and Penelope who is 18mths old. Penelope is a surviving twin and was born alongside her sister Pippa on August 15th 2017. They were 10 weeks premature, Penny weighed 977g and Pippa only 726g..
Due to quite a complicated pregnancy the decision was made to deliver the girls at 30 weeks to give them their best chance. Pippa being the smaller twin was predicted to have a much tougher battle. They were born at 12:08 pm at Sheffield’s Jessop Wing and spent 4 weeks there. When they were born, I had no concept of time – all my focus was on these two super tiny babies, fighting and kicking at everyone that came near them. After what felt like hours (but was actually only 30 minutes) they’d been stabilised and put in to incubators beside each other. There was a bit of confusion as to which girl was which – before they were born, Twin 1 was Pippa, Twin 2, Penelope – Penelope came out first, so she became Twin 1. My head was spinning from everything I’d just seen, all the alarms, tubes, incubators, it was a struggle for me to work out who was who! I didn’t want to get them mixed up already!
Hannah didn’t get to see the girls until that evening, she spent time on the post-natal ward, surrounded by other ladies who had hold of their babies while she recovered. I had to keep taking photos and going between the wards so she could see them on my phone until she was well enough to come down to the neonatal ward.
The 4 weeks in Sheffield were relatively straight forward in terms of a neonatal journey. Fortunately, both girls came in to the world in fairly good condition for their size, but we were told to expect some ups and downs.
I work in hospitality and run a very busy business, so even in my time off, I’m not totally off. I took 2 weeks paternity and spent most of that time in Sheffield with the twins. But we still had Evelyn to take care of. Thankfully, family and friends looked after her and kept her busy. She was so excited to meet her sisters and when she did, it was perfect. Carefully stroking their heads, singing songs to them, holding their hands. After my paternity leave, I was juggling a demanding job working 50+ hours a week, Evelyn, her school and who would take care of her, and then Hannah and the twins in Sheffield. I didn’t eat right for weeks, usually grabbing something from a petrol station or fast food place to eat in the car as I drove between different places. I’d never really felt stress like this before, it was all new to me – my mind was in overdrive 24/7. I barely slept, I had so many things going on at once my brain just wouldn’t shut off.
The team in Sheffield were amazing. The taught us how to change and clean our tiny babies, how to tube feed and also what all the tubes and alarms meant. It’s an extremely daunting place at first, all these new sounds, words, and equipment you’ve never heard or seen before. The nurses did their very best to keep us reassured, the consultants explained everything very clearly.
After 4 weeks in Sheffield our girls were transferred to St James’ Hospital in Leeds and spent a further 4 weeks there until they were big enough to be discharged. Our time in St James’ was a breeze, no hiccups, we just had to be patient. The girls passed all their tests and were ready to come home.
After just 8 days at home, Pippa suddenly turned very poorly. On October 19th, which was Evelyn’s 4th birthday, we had to rush Pippa to Leeds General Infirmary. Her breaths were very shallow, and she was very very pale. I dropped Hannah and Pippa at the doors to the hospital while I parked the car. As I ran from the car park with Penny I got a text from Hannah saying what room they were in – as I got there, I was led to the room and it was empty. The nurse went to find out where they’d gone and I was told they’d taken her in to resuscitation. My heart sank. I got shown to the room where she was. Hannah was stood in the corner, and Pippa was surrounded by a few different people. She’d been sedated and looked lifeless on the table as the team in A&E worked on her. As the team battled to get her stable, no one knew exactly what was wrong with her. She had an emergency blood transfusion and given anti-viral medication. Once she was stable, they moved her up in to the neonatal intensive care unit, a place we would call home-from-home for the next 10 weeks. Over the next 48 hours tests results started to come back and it was confirmed that her liver wasn’t functioning – she was suffering from acute liver failure. Pippa tested positive for CMV and it was likely the reason for her liver failure.
Over the next 10 weeks the team fought so hard to improve Pippa’s health. She had around 16 blood transfusions, and countless other infusions of blood products. Some days she would be awake and would seem alert, she’d come out and have cuddles with us and she’d have a good look around at what’s going on. Other days, she’d seem limp and lifeless. The care Pip received was incredible. The many nurses and consultants who cared for Pippa were all great. The consultants were very honest and never got our hopes up unnecessarily. The nurses were a great source of support and we continue to talk to and see some of the team now.
The pressure we were all under was unbearable. I’m still working flat out, Evelyn’s still at school every day, we’ve got Pippa to be with daily and obviously a healthy baby to look after too. At times, it felt like we were spinning a thousand plates. We tried to keep Evelyn as involved as we could, and we brought her to visit Pippa a few times a week. She knew how important it was to keep her hands clean, she always wanted to stroke her head and sing to her when she visited. Only a few weeks before Christmas, Hannah’s uncle Tony passed away after a long battle with cancer. Evelyn came to the funeral and asked lots of questions. In the back of our minds, losing Pippa was a possibility – but not something we’d thought about too much. It was at this time when the nurses knew what was happening outside of the hospital that we were offered a councillor. She came and sat with us beside Pippa or in a private room individually, and we would talk through our mental state. At this point, losing Pippa wasn’t something we’d thought about, but everything we were dealing with just piled up on top to us being at breaking point.
Just a few days before Christmas, Pippa was big enough to be moved off the neonatal ward and up to the children’s liver ward. Our neonatal journey had come to an end, but not in a way we’d hoped. After just over a week on the liver ward, Pippa’s condition deteriorated rapidly. We were told her life was coming to an end and that she wasn’t able to fight any longer. At that moment then, our world changed forever. A couple of days later, we transferred Pippa to a children’s hospice so she could spend her final days in comfort and peace. It turned out she was just too poorly and could only go on little over an hour after being taken off her life support. Pippa passed away in our arms, surrounded by her two sisters and our closest family.
In the 4 and half months since the twins were born, Hannah and I hadn’t needed much support from anyone other than the nurses. We’d been told about support available, but we both felt OK, Pippa was a tough little bird – we tried to stay positive and not think negatively about what was happening. After losing Pippa we received bereavement counselling from the children’s hospice, and they’ve also supporting Evelyn and her grandparents. One thing I think would have been useful in our time on neonatal was some form of peer support. It wasn’t very obvious if that was something available, but we knew there were charities such as Bliss who we could contact.
We shared the twins’ journey through a blog on Instagram and Facebook (www.instagram.com/twinchetts www.facebook.com/twinchetts), which almost felt like therapy itself – being able to write down your thoughts. I would recommend doing something like this to anyone who’s on a neonatal ward – not necessarily sharing their stories to the world, I appreciate that might not be for everyone – but at least writing down your thoughts, keeping a journal. Be kind to yourselves, do be afraid to ask questions, your own well-being is very important too so make sure you don’t run yourself in to the ground.
Hannah and I both agreed shortly after Pippa’s death, that her life had to become something other than a loss. We have been determined to have her life make a positive difference to others – so we fundraised for most of the year and raised over £16k for the neonatal ward that cared for her – they’ve purchased some new equipment and redecorated and furnished two parents’ rooms on the ward. We’ve also shared continued to share our story on Instagram and Facebook in the hope that it can help another family who may be going through similar circumstances.
Moving forward, we decided to launch our own little charity in Pippa’s honour, which we’ve named Pipsqueak’s (www.pipsqueakscharity.com). Pipsqueak was our little nickname for her from the day she was born. This year we’re raising funds to put together a NICU Care Package for families with babies born 32 weeks or under, babies that will have a significantly longer stay in hospital with their parents by their side. Pipsqueak’s will support neonatal units and the families in the Yorkshire region, starting in Leeds, then to Sheffield where the twins were born, moving on to other units such as Hull and Bradford in the future.
Penny’s development continues to astound us. We often forget how fortunate we are to have Penny, she had the odds stacked against her being so small at birth. But she’s powered through anything put in front of her. She’s very clever, very funny, loves a good tantrum. The only thing that sets her apart from other kids her age is her size. She’s very small, but my oh my, she is so feisty.
Over a year now since losing Pippa, my mental health is still not right, I still have days where I feel rock bottom. Neonatal isn’t to blame for that – losing Pippa is. Neonatal is a very scary place, but the incredible staff on each of the three wards we spent time in were amazing. They showed love, support, kindness and were very honest about everything. Without them, we’d be in a totally different place to where we are now. I try to keep myself busy – on days where I’m off work, I’m busy playing with the girls, the dog, working on Pipsqueak’s. I live in fear that if I slow down, my mind will sink in to a deep dark place where I’ll feel sad. I don’t want to feel sad about Pippa, I want to celebrate her – she’s my amazing little bird who flies with me everywhere, every day.
Although Pippa’s life was cut short, we tried to make lots of memories with her. We talk about her every day and will do for the rest of our lives. Each day we miss her the same, and our love for her will never change.
To read more about Pippa, her story and her illness please follow this link… https://www.pipsqueakscharity.com/pippa-s-journey
We’d like to say a very heartfelt thank you to Ian for bravely talking about his mental health & his journey.