St George’s surgeons’ pioneering surgery saves life of baby girl born with ultra-rare condition
When baby Connie was born with dead bowel, her devastated parents were warned she wouldn’t survive. But thanks to a team of paediatric surgeons at St George’s Hospital for “taking the risk that no one else would”, the tot has made a miraculous recovery.
Deborah and Dominic La Spina say they don’t believe their happy, healthy daughter would be here today, had it not been for the brilliance and bravery of St George’s surgeons that fateful July day.
St George’s is the only hospital in the UK to carry out the procedure that saved Connie’s life – and the lives of several other children since it was first trialled in the hospital 14 years ago. “It’s not the usual type of surgery, and I’m not sure another hospital would have come up with it,” said Deborah. “We’re so grateful they took that risk that no one else would.”
Despite Connie being born one month early at St Helier Hospital, all appeared well and Deborah and Dominic were overjoyed with their new arrival.
But their joy soon turned to despair when, hours later, Connie was blue-lighted to St George’s – a specialist children’s hospital rated “outstanding” by the CQC – after vomiting through the night and having to be resuscitated.
“We were told she needed surgery and we were hopeful when she went in – but then the surgeons came back, and we knew something was wrong,” said Deborah, who is also mum to Peigi, two.
“They explained that things were far worse than they anticipated and her intestine was twisted, cutting off the blood supply. We were told that most of Connie’s bowel was dead and not compatible with life. We were terrified.”
Surgeons at St George’s were determined not to give up, though, and they passed a special tube around the intestine, “like scaffolding”, to give it chance to recover.
“They drew us a diagram and explained everything in great detail,” said Deborah. “The risk was high and the odds were low. Even if the surgery worked, her quality of life would be very questionable. Would she ever be able to eat or have a normal life?”
But as the days went by, there started to be progress. Connie came off her medication and ventilator and was moved from intensive care into the high dependency unit. She amazed everyone with her progress, and was even able to start feeding on milk through the holes in her tummy.
Six weeks later, she underwent another procedure to remove the tube holding her bowel together – which, as Deborah puts it, was “the true test to see if everything had worked”.
Unfortunately, one week later, Connie started vomiting again, and the decision was made for her to go back in to surgery to remove some bowel. Once again, her health improved, and Connie started feeding orally. An infected tube that provided additional nutrition was later removed – yet Connie flourished. “It was ground-breaking,” said Deborah. “The surgery had gone so well, she didn’t need any other support. It was a miracle.”
After 95 days, the family got the best news they could ask for: their beautiful, thriving daughter could go home.
Deborah said: “Connie now is the happiest little baby, all giggles and laughs, and she smiles at absolutely everybody. She loves having people round, and her sister is over the moon with her, so in love.
“She loves to stand, though we have to hold her up, and she’s rolling over. I think she’s going to be one of those kids that grabs everything!
“She loves playing with crinkle books and has started sitting up. She’s strong willed, and wants to do everything her way. She’s doing all the things that all children her age do – and we’ve got to the place where we now look forward to seeing what she’ll do next, ticking off all the usual milestones.”
As for the team of surgeons at St George’s – and everyone else at the hospital who cared for Connie – Deborah says thank you can never be enough, and she’ll never forget what they did.
“We happened to be in the right place at the right time, the right team got together, and they came up with a plan,” she said.
“They knew just what to do, and I can’t believe any other team would have been able to save Connie. They worked with us every day, and gave us so much time. Even though it wasn’t the case, they made it feel like Connie was their only patient. Thank you for taking the risk.”
Connie and Deborah recently returned to St George’s to reunite with the team that saved Connie’s life, as well as to meet Board members.
Jacqueline Totterdell, Chief Executive for St George’s, Epsom and St Helier Hospitals Group, said: “Seeing this gorgeous little girl flourish brought a huge smile to my face. Connie’s immense bravery, not to mention the incredible efforts of all those involved in her care, is awe-inspiring, and I’m so proud that our talented team of surgeons had the courage to act as they did. It was an absolute privilege to meet Connie and her wonderful family, whose trust and support in our team and their daughter never wavered even during the toughest times imaginable.”
Dr Richard Jennings, Chief Medical Officer for St George’s, Epsom and St Helier Hospitals Group, said: “The care that Connie received from our teams is nothing short of outstanding, and there’s no doubt their actions saved her life. Knowing Connie is happy, healthy, and back home with her family is the best news we could ask for – and an example of why we do what we do.”
Consultant Paediatric Surgeon Mr (Prof) CK Sinha said: “The surgery was a huge success, and we were so excited to see it happen, but it was also a challenging journey. We kept ourselves positive, and a huge credit needs to go to Connie’s parents, who were so supportive throughout. It was a whole team effort, and everyone was there to support Connie and her parents throughout their journey.”
Consultant Paediatric Surgeon Mr Zahid Mukhtar said: “Connie’s family were on board, and we wanted to give them some hope that she could survive. This isn’t a standard procedure, and it’s radically different from what is done elsewhere. But we’ve seen it work, and thankfully it did in Connie’s case, too.”