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Summer will always be part of our family
Summer will always be part of our family
“We talk about her every single day.”
This Christmas will be the second Christmas since Summer died. She was just three months old when she died.
For Lauren and her husband, Rob, there will be moments when missing their youngest daughter feels almost unbearable. Yet Summer remains part of family life, in the memories they cherish and the conversations they still have about her. There will also be stockings to fill, presents to wrap, and two young children, seven-year-old Austin and four-year-old Amelie, excited for Christmas morning.
Today, ellenor continues to support the whole family. That support didn’t end when Summer died. It began while she was still alive, when Children’s Clinical Nurse Specialist Roisin cared not only for Summer, but also made time for Austin and Amelie, checking in on them and helping Lauren and Rob navigate life as a family.
Now, Austin attends GEMS, ellenor’s bereavement group for children, as well as play therapy. Lauren knows bereavement counselling will be there whenever she’s ready. Her mum is receiving counselling through ellenor, and as four-year-old Amelie grows older, she too will be able to access specialist support.
Looking back, Lauren says people often misunderstand what a children’s hospice does.
“I thought hospice care was about dying,” she says. “But for us, it was about helping us be a family. Roisin gave us the confidence to bring Summer home. She gave us memories we never thought we’d have. I honestly think those memories have saved us in so many ways.”
It wasn’t the future Lauren and Rob imagined when she was expecting her third child.
“We hoped she’d be that third child everyone tells you just slots into your life. We’d been lucky. We’d had two healthy children and we just expected life to carry on as it was, with another little person to love.”
Their son, Austin, and daughter, Amelie, couldn’t wait to meet their baby sister. Family life was busy, noisy and happy. Summer was going to become part of it.
Even when doctors spotted a small abnormality with Summer’s heart at her 20-week scan, Lauren and Rob, were reassured. More scans followed, along with an MRI and genetic testing.
“We almost felt reassured because we’d had so many tests,” Lauren says. “Every scan came back saying everything else was fine.”
Apart from a heart condition doctors believed could be corrected later in childhood, there was nothing to suggest Summer wouldn’t live a normal life.
Then, at 36 weeks pregnant, everything changed.
The previous day, a routine scan had detected fluid, so Lauren returned to hospital for a glucose test. But when she began to feel unwell and thought she might have an infection, she went to the maternity unit to be checked. Doctors became concerned and decided Summer needed to be delivered.
Two weeks later, at Evelina London Children’s Hospital, an MRI revealed the devastating news. Summer had suffered a severe hypoxic brain injury.
Even now, nobody knows why.
“We were told her prognosis was very poor,” Lauren says. “We suddenly found ourselves having conversations about palliative care and advance care plans. Conversations you never imagine having about your baby.”
“I kept saying it had to be my fault. I should have known something was wrong.”
Doctors reassured Lauren that nothing she had done had caused Summer’s injury. What they couldn’t tell the family was how long they had together.
“It could be days, weeks, months or years. That’s all anyone ever told us.”
When doctors began talking about bringing Summer home, Lauren’s first reaction wasn’t relief. It was fear.
“I knew she was going to die,” she says. “While she was in hospital there were nurses everywhere. Once she came home, she was our responsibility. We were suddenly expected to become nurses and doctors as well as Mum and Dad.”
Then they met Roisin, ellenor’s Children’s Clinical Nurse Specialist.
Roisin guided Lauren and Rob through every step of bringing Summer home. She organised equipment, taught them how to tube feed Summer and use suction machines, and helped with medication and paperwork. We could call if we were worried.
Looking back, Lauren says none of those practical things are what she remembers most.
“Roisin gave us the confidence to bring Summer home. She made us believe we could actually do this.”
With Roisin beside them, Lauren and Rob no longer worried about becoming nurses. They could focus on what mattered most – being Mum and Dad.
Instead of spending every day in hospital, Summer was where she’d always been meant to be – at home with her family.
As Christmas approached, the family faced another difficult decision.
Months before Summer was born, they had booked a trip to Lapland UK for Austin and Amelie.
“It was the one happy thing we had planned,” Lauren says. “Everything else had become about hospitals and appointments and the fact that our baby was dying.”
Lauren wanted to cancel.
“I was terrified. I kept thinking, ‘What if she dies on the journey? What if she dies while we’re there?”
Then Rob said something she has never forgotten.
“This might be our only Christmas memory together.”
So they went.
Behind the scenes, Roisin contacted the local hospital, spoke to the team at Lapland UK and made sure there was a plan if Summer became unwell.
“We were completely blown away. We were treated like royalty,” Lauren says. “The elves knew Austin and Amelie by name. They’d thought of absolutely everything.”
For one precious day they weren’t thinking about feeding, seizures or prognosis.
“We were just Mum, Dad and three children making Christmas memories. It was honestly perfect.”
The following day, Summer deteriorated.
The family thought they would lose her that night. Surrounded by the people who loved her most, Summer died peacefully on Sunday morning.
Looking back on everything they have been through, Lauren says she sees things differently now.
“I think we were surviving when she was here. Now we’re living again. As much as it breaks my heart, I’m glad she’s at peace. ellenor were a lifeline for us. We could have felt completely on our own, but we never did.”
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