"They gave us the only thing we wanted - time with Ottie"

Warning: This story talks about the death of a child.

Ottilie, our little ray of sunshine, was born on 10 January 2021 and our world lit up.

Her skin was like satin, her tiny fingers held on to our fingers and, like all parents, James and I had never known love like it. Her life was not easy, but it was one filled to the brim with fierce love and hope. It’s not what you would ever wish for your child, but I would wish for it again for eternity, because despite the mountains we had to climb, it was the only time we got with her and she is worth celebrating.

Ottie was wanted and planned for. I took my tablets, kept my baths cool, my heart rate below 150 and avoided all listeria-giving foods. I was sick throughout, but every night when I went to sleep, I thought about meeting my baby and bringing her home.

Her growth slowed towards the end of my pregnancy. Many tests were run and nothing exceptional was found. After birth, we had two days with her in the post-natal unit before she was rushed to a special care baby unit (SCBU) with her first bout of pneumonia.

I say it with ease now (knowing this was not the worse moment) but at the time I couldn’t breathe with fear for Ottie. After a few weeks of being on and off breathing support, we almost got to the point of going home, but Ottie’s condition then deteriorated and she needed an emergency transfer to St Thomas’ neonatal intensive care unit (NICU) and intubation. Our transfer was desperate and perilous, but we knew it was life or death for Ottie.

That night, my brother Tom and the staff at Tommy’s saved her life for the first of many times.

Within a few weeks, Ottie’s breathing tube had been removed. She was breathing on her own and even having a go at breastfeeding so we were moved out of NICU to the high dependency unit (HDU) and then to SCBU. Home was in sight again.

I had heard of Ronald McDonald House Charities UK, my brother is a paediatrician and had told me about it but we continued to try and persuade ourselves that we weren’t going to be in hospital that long and that we had no need for a room. However, our nurse was insistent about getting us on the waiting list and for that we are very grateful. Even though we live in South West London, using public transport took us around an hour to get to and from. Looking back on it now, it was a godsend.

Unfortunately it wasn’t long before we were back in HDU and Ottie’s breathing needed more support. Genetics had been questioned on and off – most tests had come back negative, but it was at this point that the idea that a genetic component was revisited by her team. As Ottie’s health became more medically complex, the days were incredibly tough. It wasn’t the lovely nurturing time with our baby we had dreamt of, it was a stream of consultants and people coming to see us.

Ottie being alone was not an option for us and as the coronavirus pandemic worsened, only one parent was allowed on the ward at a time. Luckily, we had a room at the Ronald McDonald House Evelina London so one of us could always be with her.  It would have been even harder trying to keep track of everything that was going on if we weren’t able to be there and speak to the specialists in person.

We took turns doing three/four hour shifts with Ottie and it was a relief that we had somewhere to eat and maybe catch up on some sleep close by. The House had a family kitchen, but there were also an abundance of food deliveries to the House which truly made a difference; we barely had the energy to cook so it was always such a treat to not have to worry about food.

Almost all specialities at the hospital came to offer their help, run tests and suggest diagnostics. Ottie was rarely without cannulas, delivering everything from antibiotics to morphine. Every time somebody approached her cot side with a needle, our gut instincts told us to rip it from their hands, pick up our baby and run.

But whenever we came back to the House, the team were so wonderfully welcoming but they also never bombarded us and seemed to know when we weren’t up for talking. One memory that really sticks in our minds was one evening when the handyman at the House fixed a puncture I had on my bike. We had mentioned it in passing to him that it had happened and without any request, he fixed it for me on his next shift. It was just a beautiful, quiet act of kindness.

Ottie was at a point where she needed help with her breathing, metabolism, bladder, and muscles, just to name a few.  She had hundreds of blood tests, MRIs, x-rays, functional tests and others I can’t even remember. These incredible professionals were not only trying to work out what was wrong with our puzzling little girl but navigating our bombardment of questions and very unqualified ‘suggestions/advice’. We were ‘those’ parents that read a few (hundred) medical journals and believed that qualified them as a neonatologist.

It was thought that Ottie must have a form of congenital muscular dystrophy, but after months of tests, no known form of the condition was found. It was only months after her death that we would get a diagnosis. Ottie had a condition so rare it does not yet have a name, so rare that she is the first person to be diagnosed with it in the UK and only the 6th person worldwide to be diagnosed. The cruellest lottery.

The week before Ottie died, we had renewed hope and momentum. We had a plan to get her home with breathing support, she was gaining weight and I was back to telling her about what sea air is like and how she will enjoy trees and nature.

On May 17, I was holding her in my arms, kissing her head and chatting to the nurses when her blood saturation dropped. Within a few minutes the emergency alarms had once again been called for my little girl. We were asked if we wanted them to continue the resuscitation. “Yes – of course!”, I said.

My partner James was by our side within 15 minutes because he was staying at the House. It was a moment no parent should have to go through, but to have been there without him was unimaginable.

Sitting in a meeting later that day, the type of meeting no parent should ever have to go to, we were full of questions; ‘’What next? How can we help her? When can we extubate her?’’.

Later that night, we realised that the ‘let’s wait and see how she does’ meant the end was near and inevitable. It was with our family through the coming hours that we realised what must be done for Ottie.

On Monday 18 May, we withdrew life support and Ottie died in our arms, her family around her and in no pain – a small mercy we could provide for her.

We set up a fundraiser to raise money for Ronald McDonald House Charities UK and Evelina London Children’s Hospital and with the help of friends and family who have walked, cycled or rowed 130 miles (for the 130 days we had with Ottie) we have currently raised over £44,000 for these two incredible places. They gave us the only thing we wanted – time with Ottie.

It means so much to us that thousands of people, people that didn’t even know Ottie, are thinking of her.

To anyone thinking about whether to fundraise I would like to say this; having a child in hospital is one of the worst things that can happen in your life. You cannot imagine or compare whether it is for nine months or nine days.

Broken bones or a terminal diagnosis, that first instance of fear for your child is the same.

I hope you never have to experience a Ronald McDonald House, but if you are ever in need, they are an absolute beacon.