Six-year-old Toby thriving after undergoing surgery to remove part of his lung
Mum Laura Meredith had never heard of Congenital Lobar Emphysema, a rare lung malformation, until her baby boy was diagnosed just a few days after birth.
The rare and life-threatening disorder refers to an obstruction of the airways which leads to an overinflated lobe or lobes of the lung. It causes severe respiratory distress in newborns and affects one in every 20,000 – 30,000 babies.
Following a normal pregnancy, Laura, from Dudley, gave birth to Toby via C-section at Walsall Manor Hospital.
At first, everything appeared well, but Laura noticed that Toby wasn’t feeding well. When she undressed him, she was shocked to find his fingernails and toenails were purple and his skin was turning blue.
Laura recalled: “I raised the alarms immediately and the nurses quickly took Toby away. He was moved to the Neonatal Unit and intubated.”
“I remember sitting in the unit surrounded by all these tiny babies and my son seemed so out of place. We were distraught but were hopeful Toby would recover and we could take him home soon. We didn’t realise at the time just how seriously ill he was.”
Following tests at the hospital, doctors told Laura that Toby’s heart was born on the wrong side. There was also a serious problem with his lungs and they would need experts from Birmingham Children’s Hospital (BCH) to diagnose and care for him.
Toby was blue-lighted to BCH, where he underwent tests to confirm he had Congenital Lobar Emphysema.
Laura recalled: “We were in shock. My partner and I were very upset and so worried for him. I was also recovering from surgery and in a tough place after losing my Mum while pregnant with Toby.
“It was a really hard time, but the staff at the hospital really looked after us. Mr Singh and the team talked us through everything and supported us as a family.”
Toby underwent emergency surgery at five days old, called a neonatal lobectomy, to remove part of his left lung. It was carried out by Mr Michael Singh, Consultant Paediatric Surgeon. Only around 25 of these procedures have been carried out at the Children’s Hospital in the last 10 years.
Laura shared: “We were told it was a very complex surgery and it would take over five hours. There were risks involved but it was the best chance for Toby.”
During treatment, Toby went under cardiac arrest, but his life was saved by the hospital team and the procedure was successful. He recovered in the Paediatric Intensive Care Unit (PICU) before moving onto a ward.
Laura explained: “We were incredibly thankful to Mr Singh and the team for everything they had done.
“We expected to be in hospital for a long time recovering but a few weeks after his operation, Toby had an x-ray and it was as though a miracle had happened. The fluid in his chest had gone. We could finally take him home. It was just the most incredible relief.”
Due to his condition, Toby has several challenges including Broncho Vascular Disease, Harrison Sulcus Syndrome and Asthma and receives support from Walsall Manor Hospital.
Toby, now six years old, is thriving. He is enjoying year one at school and loves playing football with his older brother.
Laura said: “We still have regular check-ups but we’re comforted knowing that Mr Singh is at the other end of the phone if we do need him.”
Mr Singh shared: ''I am so happy Toby is doing so well after his neonatal lobectomy. Our Specialist Thoracic Surgery Service continues to provide excellent care to babies born with these rare congenital lung malformations.''
Laura stressed the outstanding care they had received at BCH, sharing: “It’s emotional talking about the support we received and what the hospital did for us and Toby. Mr Singh saved my little boy’s life, what more can I say? Thank you doesn’t seem enough.”
Since Toby’s surgery, Laura has gone on to work as a Clinical Support Worker on a Children’s Ward at Walsall Manor Hospital, to support families going through similar hospital journeys.