13-week-old Lando has never been home. He hasn’t even been outside. But, later this week, that might be about to change.
Lando is Caitlin and Ross’ third child, so when he arrived very quickly and much smaller and skinnier than expected, they felt immediately that something wasn’t right. At eight minutes old while in his dad’s arms, Lando stopped breathing and the resuscitation team were called. With a terrified Ross following closely behind, Lando was rushed to the neonatal intensive care unit to be stabilised.
Once recovered enough to leave the delivery room, an anxious Caitlin was taken to NICU to be reunited with her new son. As she arrived, she saw Ross crying in the corridor. Fearing the worst, Caitlin’s heart jumped into her throat.
Caitlin and Ross were taken aside and told that Lando had Tracheo-Oesophageal Fistula with Oesophageal Atresia (TOF/OA) – a rare condition where the oesophagus (food pipe) doesn’t connect to the stomach. Instead, it connects abnormally to the airway, allowing food and stomach fluid to pass into the lungs.
Just hours later, Lando was sedated, ventilated, and transferred to the Noah’s Ark Children’s Hospital for Wales, where he underwent the delicate operation to repair his oesophagus.
Caitlin said: “The gap between Lando’s oesophagus and stomach was almost as big as it could possibly get and would have been impossible to repair had it been any worse. The point where his oesophagus was connecting to his airway was also right between his lungs, so the surgeons had to tie it shut to stop stomach fluid going into them.”
Though the operation was a success, Lando experienced a number of serious setbacks during his recovery. At a week old, he had to be sedated and ventilated again after complications with his central line resulted in medication leaking into his lungs, causing them to collapse. Later, when he pulled out his surgical feeding tube, Lando aspirated and his lung collapsed again.
Because of his TOF/OA, Lando also developed severe reflux and feeding difficulties, causing milk and stomach contents to travel back into his oesophagus and lungs, resulting in repeated infections and pneumonia. As Lando wasn’t gaining weight, his surgeons decided to perform a fundoplication, an operation to stop reflux by tightening the top of the stomach around the oesophagus. He also underwent an oesophageal dilation and a feeding tube was placed directly into his stomach to allow food, fluids, and medications to be delivered directly, bypassing the mouth and throat.
Caitlin said: “Handing over my eight-week-old baby for a second surgery was horrendous. The first time I think I was in shock. The second time was worse, because I knew too much. It took six hours and I can confidently say that they were the longest six hours of my life.”
After surgery, Lando faced more hurdles. His stitches didn’t hold, and one terrifying day, his scar began to split. The crash team were called and they arrived just in time to see Lando’s bowels begin to protrude through the wound. Lando was again rushed to theatre for emergency surgery.
Thanks to the specialist care and surgical expertise Lando received, his condition finally began to stabilise and within three weeks, he was well enough to be transferred to Island Ward. His medical team now suspect that he also has tracheomalacia, a floppy airway caused by repeated intubations. It means he may need to stay in hospital a little longer, but for the first time, Caitlin and Ross are beginning to look forward.
Caitlin said: “We’re hoping to take him outside for the very first time this week. After everything he’s been through, it’ll feel like such a huge milestone.”
