His essence will live on forever: Brandon's story

***Trigger warning: infant loss***

Liana’s pregnancy with her second child, Brandon, was a nine-month “emotional rollercoaster”, from experiencing sudden prenatal epilepsy which resulted in a car crash with her then six-year-old daughter Elisia, to finding out her unborn baby boy had a serious health complication. Relieved to discover that her pregnancy could continue, only then to find out the extent of baby Brandon’s condition and the subsequent ups and downs of the neonatal intensive care unit (NICU), Liana’s journey was full of both hope and heartache.

Despite her harrowing experience, which ended with the shattering loss of her baby at just 28 days old, Liana is passionate about helping others going through similar trauma and is dedicated to giving back to the charities which helped her and her family, including Ronald McDonald House Charities UK.

Guest blogger: Liana

My pregnancy with Brandon started OK, I was just suffering with the usual niggles associated with being pregnant, such as tiredness and nausea. Then, at 16 weeks, I went to have a gender scan. The sonographer gave us the lovely news that we were expecting a boy, but she looked concerned. She said it looked like his stomach was sitting a little bit higher than it should be. She referred us to Worthing General Hospital, where I was due to be having Brandon. Our nearest hospital is the Princess Royal in Hayward’s Heath, but I chose not to have Brandon there, having suffered birth trauma and PTSD after giving birth to my daughter Elisia there in 2013.

Shortly after our gender scan appointment, I got a call from Worthing Hospital. They advised us not to Google anything and encouraged us not to worry, but they thought the diagnosis was a congenital diaphragmatic hernia (CDH). I listened to the doctor’s advice and didn’t do any research, but as the day went on, my husband Kevin decided to Google the condition and he called me in a mess. He said it was awful. I then had a look online myself and was really upset.

CDH is a condition where the baby’s diaphragm does not form as it should. In some babies with CDH, the organs in the abdomen, such as the stomach, bowels, and liver, go through the hole in the diaphragm. These organs take up space where the lungs and heart should be, and the lungs do not grow as expected. I learned that the condition can be treatable but that in the most severe cases, the baby may not even make it through pregnancy.

Early the following day, we had an appointment at the Foetal Medicine Unit at St George’s Hospital in Tooting, London. When we got there, we met Professor Basky Thilaganathan, the hospital’s Director of Foetal Medicine. He was absolutely lovely, but he had the unfortunate job of having to confirm to us that our unborn baby did have CDH. He said they couldn’t be sure of its severity until the pregnancy was a little bit further along.

We would have to wait another 10 weeks to find out whether the pregnancy could continue.

That was really difficult. It was the stage of pregnancy when you start to feel the baby kick, your bump starts to show, and you begin bonding with your unborn child. We’d also just told everyone in our village that we were expecting but we didn’t want to share with everyone that there were complications.

Then, at 24 weeks pregnant, I had a seizure at the wheel when my little girl Elisia was in the car with me. I feel so thankful that when it happened, I was pulling out of a supermarket carpark, so I wasn’t going fast, but we ended up in a bush.

It was terrifying for Elisia, who was only six at the time. The engine was running but the car was locked, so she couldn’t get out and nobody could get in. People on the outside of the car were telling her how to get out and she was amazing, even though she must’ve been so scared.

The next thing I knew, I was in an ambulance. I was freaked out when I realised what had happened. When I got to the hospital, I had to tell everybody there that I was pregnant, because my bump was still quite small. They didn’t seem too concerned about the baby, explaining that they are usually well-protected in the womb. They eventually scanned me, and all was fine, luckily.

After that, I had to go on medication to try to prevent any further seizures and I was no longer able to drive. I then developed quite extreme hypoglycemia and it turned into reactive hypoglycemia, which meant I would have hypos after eating, when my blood glucose levels would become dangerously low. I also had to try and control my blood sugar levels to control my seizures, so trying to manage everything was just so difficult.

I continued to have seizures throughout my pregnancy. On one occasion it happened as I was crossing a road, resulting in another near miss. Another time, I had a seizure in my bedroom and ended up hurting myself by falling onto my glass dressing table. The final one I had during my pregnancy was, ironically, next to the A&E department at the hospital, where I was going to an antenatal appointment. I then had another seizure in the lift and was subsequently admitted to the High Dependency Unit (HDU) until I gave birth to Brandon.

In the meantime, at 26 weeks pregnant, I’d been back to the Fetal Medicine Unit and Professor Basky had told us that Brandon’s prognosis looked good. We were given a 70% chance of survival, which was a very positive outcome. They said the plan after he was born was that he’d spend three or four days on the neonatal unit (NNU) before having surgery. They anticipated we’d stay in hospital for four to six weeks after that.

Not knowing whether we’d be able to get a room at Ronald McDonald House Tooting, we booked into the hotel near the hospital. It was going to work out at around £4,500 for our stay. We live in West Sussex, around an hour’s drive from the hospital, so commuting back and forth just wasn’t feasible.

Brandon arrived by C-section on 12 August 2019. When he was born, we heard one tiny little cry, but he had to be intubated, so he didn’t make a sound after that. At the time we had no idea that would be the last time we would hear his sweet little voice.

Straight after he was born, Brandon got taken to NNU and I was taken to HDU for monitoring.

Not long after that, we were offered a room at the Ronald McDonald House Tooting.

When we first went in the Tooting House, I was absolutely amazed. I couldn’t believe that a place like this was available, free-of-charge. Our bedroom was like a hotel room and there was a communal kitchen, living room and playroom as well. We were so appreciative to have a room with all those facilities, and not to be paying out a fortune for the hotel we’d originally booked.

The staff at the Ronald McDonald House were so welcoming and understanding too. When we arrived, they gave us a tour, explaining every detail of the facility. I was so grateful, as it meant Elisia could come and stay with us from time to time. When she came at weekends, she would play in the playroom and in the garden; the House allowed her to do the ‘normal’ things six-year-olds like to do, in a homely environment.

Meanwhile, things at the hospital were not looking so positive. Around day four, the doctors realised Brandon was really, really poorly. When the consultants were doing their rounds, a lovely doctor called Amy asked us to go with her and sit with her for a chat in the quiet room. We soon discovered that this was where all the bad news was delivered.

Amy said to us something along the lines of: “Your baby is extremely sick, one of the sickest babies we’ve had here in a long time.” She added that there was a real chance that Brandon wouldn’t make it and that we should “prepare ourselves for the worst”. To say that it was a really, really sad day would be an understatement.

After the dreadful news Amy had given us, our days became numb, and each day was filled with more anxiety than the previous day, because we never knew what it would bring. Love and anxiety were all I felt.

Physically, I was recovering well from surgery, but my breasts were engorged and leaking, I was post-baby bleeding and my arms felt too light; I was yearning for the heaviness of my baby boy in them.

We’d been in hospital for nearly a month when one of the lead neonatologists, Justin, told me that they, he and his colleagues, were tirelessly trying to think of something to help Brandon’s condition improve. Despite their efforts, he was declining quickly. He’d had his surgery, but the aftermath was really taking its toll. We were told to ‘prepare for the worst’.

In the end, there was nothing more they could do to save him. Brandon died on 8 September 2019, just after midday. Consultant neonatologist Dr Sijo Francis, who’d been with us on the day Brandon came into the world, was there when he passed too. He had told us beforehand that everything apart from Brandon’s morphine would be disconnected and that I’d be able to hold him while they took out his breathing tube. Sijo had explained, with tears in his eyes, that without the tube down his throat and with him being in my arms, his last moments would be the most comforted and comfortable he had ever been.

When that moment came, it was full of love and pain in equal measure. The first time I got to hold my little boy was also the last. I remember Kevin looking at the monitor saying, ‘He’s gone.’ And as soon as he did, I felt Brandon leave; he suddenly became heavier, and I felt him go. Inconsolable, I remember breaking down with Kevin. We all held each other. The pain was immeasurable.

At Brandon’s funeral, we chose to play the song ‘Three Little Birds’, by Bob Marley, as we lit candles in Brandon’s memory as a symbol of hope. ‘Three Little Birds’ was playing as I gave birth to Brandon and it was the song I sang most to him during those many long hours by his side in the NICU. It was, therefore, the perfect title for a book I went on to write about what it’s like to experience the devastation of infant loss. The book is a raw and personal account of the devastation of losing a young child, which I began to write shortly after Brandon passed away. I was proud to have it published in October 2022 and have been uplifted by the many wonderful reviews I’ve received, especially from other parents who’ve been on a similar journey.

A donation from every copy of ‘Three Little Birds’ sold will be gifted to Ronald McDonald House Charities UK and the First Touch charity. Kevin, Elisia and I really appreciate the support we received from these charities. I don’t know what we would have done without the Ronald McDonald House. It allowed us to be at the hospital as much as possible. It meant that I could be on the ward at 7am and stay until 10pm. After losing Brandon, it was important to know that I’d been with him as much as I possibly could’ve been. Staying in the hotel would’ve been a completely different experience, difficult to manage logistically and not as close as the Ronald McDonald House either.

I’m pleased to be able to give something back to the Charity, which has come to mean so much to us. I am also grateful to Brandon, who let us share his beautiful, all-too-short life with others, to help other families in their times of grief. I know in my heart he would’ve wanted this, as his little footprint could be left in the world as one of healing and love. His essence will live on forever.

If you would like to purchase a copy of Liana’s book, you can here.