Bethany's story

22 June 2019

Bethany was born with a congenital heart disease called Hypoplastic left heart syndrome (HLHS) and an underdeveloped aorta, which restricted blood flow through her heart. Her mum, Sabrina, told us their story.

“I learned that something wasn’t right with the baby during a routine 22 week pregnancy scan at Kings College Hospital, where I work in Maternity. Afterwards, it felt like all I could hear was white noise and I just cried my eyes out. I went back to my colleagues, who were so supportive. One of the consultants took my scan report to another and they sat and read it, and they were the ones who mentioned the possibility of HLHS before it was even verified.”

Sabrina’s care was transferred to St Thomas’, where cardiac specialists conducted more tests and HLHS was confirmed. Bethany was born on 10 May 2018, and her family, including Dad Andy and brothers Kameron, seven and Joshua, four, had to face knowing that their little girl would have a difficult start in life, with numerous surgeries needed and the constant threat of infection.

“I was adamant that I wanted her home,” said Sabrina. Bethany did indeed make it home in the August of that year, but only for three days as she’d contracted sepsis. “She fought the sepsis and we got to home again, but we went back the same day because she still wasn’t right.”

Because of Bethany’s condition, it was too difficult to give her the eight different medications she needed with an intravenous line, which meant she needed an uncomfortable Transhepatic line directly to her liver. “Her veins were rubbish, just like mine – she got that from Mummy. She looked like a pin cushion,” recalls Sabrina. “The line had to be removed, and we were told that once it was out, she would only have between eight and 24 hours to live.”

But tiny Bethany continued to fight. The family were referred to Demelza beginning of October by the children’s palliative team at Evelina London Children’s Hospital. “I was scared of the word hospice at first,” Sabrina admitted. “The thought of palliative care really scared me. Some of the nurses from Eltham came to see us, sat with us and chatted to us. We came straight from the hospital to Demelza with Bethany for step down care.

Upon arriving at Demelza, it was so different to what we imagined it to be. The atmosphere was lovely – it was like a home from home. Everyone was so friendly and loving to our family, the care assistants and nurses were looking after the boys and we didn’t have to worry about anything but Bethany. It was so nice not to think about what we were going to have to eat or cooking dinner. They took care of anything we needed.

Bethany had a room downstairs, and we were given a family room to stay in upstairs, but we also had the choice to sleep on little beds in her room if we wanted to stay near her. We had time to catch up on some sleep after being dealt the blow that she wasn’t going to survive, but she did – she lived for another four months.”

Sabrina and Andy were able to take Bethany home to care for her themselves, and not only did they get to spend Christmas together, but both Daddy and Mummy’s birthdays. “We were actually staying at Demelza for respite care on my birthday, and the care team told me to go and enjoy myself, so I got to stay with Bethany all day and go out in the evening for a bite to eat with my friends.”

Even with the support of Demelza, Sabrina, Andy and the family lived with the constant uncertainty that any moment spent with Bethany could be their last together.

“She was a smiley girl who seemed to have thrown away the rule book. She’d just started to learn how to grab her tubes out - she was cheeky, but she could get away with it.”

At the beginning of February, Bethany had caught a head cold that began to spread to her chest.

“My instinct told me something wasn’t right with her breathing, and I was worried about her, so I liaised with the out of hours palliative care team overnight,” Sabrina said. “The GP came in the morning and immediately called an ambulance because her chest sounded so ‘crackly’, so she was taken straight to Evelina.

The nurses there had been taking care of Bethany since she was three weeks old. They wanted me to get some rest, because I hadn’t slept or eaten. I was so used to providing 24-hour care at home for her, but they reassured me they would give her the care that she needed, so we went home. I spoke to them that night at 11.30pm, and she was still the same as when we left her. The next morning we received a phone call at 6.00am to tell us that Bethany was in cardiac arrest. By the time we got to her, she had died.

I did her last rites and I washed and dressed her, which is something I’ve done for other parents in my job at King’s, but it was different when it was for my own child. I just couldn’t get my head around it. We had forgotten how poorly Bethany was on the inside because she’d been putting weight on, she was smiling, she was bouncing back. But we have those nice memories of her to look back on. Considering her diagnosis, she did really well.”

The family were able to take Bethany to Demelza’s Eltham hospice just a few hours after she had died, to stay in one of their specialist Bereavement Suites.

“We found it very therapeutic to be able to use the Bereavement Suite at Demelza. It was nice to just sit there and hold her, and to have her for that little bit longer. Family members would take the boys out for a bite to eat and Kameron would come straight back into the Butterfly room to see Bethany, because he wanted to check on his little sister. The nurses and carers were so soothing and supportive at such a difficult time. Everyone did everything they could to make sure we were okay and had everything we needed. Even Amelia, our Family Support Worker, would bring sandwiches up from the kitchen on a trolley to make sure we were eating.

We were able to get Bethany’s hand print in the middle of one night with the help of the nurses, and the next day we let the boys add theirs to the canvas so we could have all three children together on the canvas. Having family come to visit Bethany in the Bereavement Suite and having access to the family lounge really opened everyone’s eyes that a hospice isn’t as scary as you first think.

We’ve got a teddy bear made out of Bethany’s baby clothes, which has got her ashes inside. The boys treasure it and so anywhere we go, Bethany comes too. They’ll always be her big brothers. It’s so nice that we’ve still got the support of Demelza as a family – they haven’t forgotten about us even though Bethany’s not here with us anymore. Amelia from the Family Support team has been supporting the boys, she goes to their school every week.

It would have been Bethany’s first birthday in May. We made her a birthday cake in the shape of a number one and lots of her family released balloons with messages tied to them. I would rather have done something to celebrate her life than sit at home and mope. We’ve been doing loads of fundraising for both Demelza and Evelina, and we want to raise as much money for them as we can.

I’ve realised that we won’t ever get over our grief, but we can learn to live with it. I don’t think you ever get used to it. We have good days and we have bad days, but we’re getting there. We can’t fault the support that we’ve had from Demelza, and still receive. They were so attentive and supportive, and made the experience so much better than it could have been.”

Can you spare a few pounds to help more children and families? Please make a donation to our Bereavement Suite Appeal here.

Thank you.