‘We had to prepare to say goodbye before we’d even said hello’ – family’s story highlights vital hospice support

When Heather and David learned their unborn daughter Sophia had a serious heart condition, they faced the possibility of losing her before they had even met her. Despite the odds, Sophia lived for seven precious weeks. With support from Acorns Children’s Hospice, her family made memories they will treasure forever. Now, they are sharing their story to help other families facing the unimaginable.

For Heather and David, finding out they were expecting twins should have been a time of excitement and anticipation.

But joy turned into heartbreak when a routine scan brought devastating news, revealing one of their twin girls, Sophia, had only developed half a heart.

The family suddenly faced decisions that no parent should ever have to make.

Heather and David refused to give up hope. “If Sophia was fighting, we would fight,” Heather said.

Heather gave birth by caesarean at 36 weeks. Weighing just four pounds and four ounces, Sophia made it into the world despite fears she might not survive birth. “She was a little fighter,” Heather remembers. “I thought she’d make it.”

But the weeks that followed were filled with fear and uncertainty as Sophia remained in neonatal intensive care. Heather said: “I thought if I pick her up, am I going to pull the tubes out? That was my worst fear, and I regret not asking to pick her up more because I didn’t want to break her. She was a teeny, teeny tiny thing.”

At six weeks old, Sophia’s condition took another devastating turn. The medication keeping her heart working was damaging her other organs, and they faced the unimaginable prospect of saying goodbye to their little girl.

For Heather, knowing Acorns Children’s Hospice was there to support the family, whatever happened, offered some comfort.

“It helped me get through a little bit knowing they’d be there both ways, good or bad,” she said.

Sophia died in her dad’s arms, aged just seven weeks.

Following her death, Sophia’s family were able to spend another six precious days with her in one of Acorns special bedrooms – a private temperature-controlled room. There, Heather could finally bathe her daughter for the first time, surround her with family photographs, play music and take her outside into the garden – longed for experiences they had missed while Sophia was in hospital.

“I got to make more memories,” Heather said. “She was seven weeks old and had never had a bath.”

At Acorns, Heather and David could spend time with Sophia without all the tubes and equipment.

“Without Acorns, I would have been lost. Those extra six days were amazing. The memories we made – I can’t thank them enough. That’s when she was my little girl with just nothing extra, no tubes.”

Acorns also helped arrange Sophia’s funeral, including the horse and carriage Heather had wanted, and created keepsakes of her tiny hands and feet.

“We can never repay what they’ve done,” Heather said. “She’ll never be forgotten.”

Now, Sophia’s story is helping Acorns highlight the support available to families whose lives are turned upside down with a diagnosis during pregnancy as part of the charity’s Autumn Appeal.

Sophia’s story shows just how important it is for families to have support from the moment they receive a devastating diagnosis.

Acorns Children’s Hospice and supports more than 1,100 families every year, including those like Heather and David’s. This care and support is provided from Acorns three hospices in Birmingham, Walsall and Worcester, as well as in family homes and their communities.

Acorns needs around £40,000 every day to provide its vital children’s hospice care, with over 75% of that amount coming from donations, fundraising and income from its charity shops.

To support families like Sophia’s and help ensure no family has to face these moments alone, donate to Acorns Autumn Appeal at acorns.org.uk/Sophia.