River Stephen Camile Mbunzama spent his first 320 days of life in the Royal Hospital for Children, Glasgow (RHC).
Today is River’s first birthday (26.08.24), and he will experience a milestone that his mum, Roseann Singleton, has eagerly anticipated for the past year: celebrating at home with his family.
Roseann shared River’s story to mark the tenacity and fight that he has given and as a tribute to the dedicated Royal Hospital for Children teams who cared for him. Their unwavering support allowed River to defy the odds.
River has an atrial septal defect in his heart and two small heart holes. Surprisingly, though, it wasn’t either of these that held him at hospital. River has Tracheobronchomalacia (TBM) – a rare condition where the windpipe tissue is unusually soft and weak. Additionally, he has a Laryngeal cleft, adding to the complexity of his situation.
Roseann explained that River was born in the Royal Alexandra Hospital (RAH) on the 26th of August 2023, and everything seemed fine. In the early hours of the next day, he showed challenges with breathing and feeding. He was then transferred to the RHC.
Since then, River has spent 11 months in the hospital including multiple months in the neonatal intensive care unit (NICU) and paediatric intensive care unit (PICU). And in that time he has undergone more than 20 procedures to help treat his condition.
For parents Roseann and Rudy, the past year has felt like one step forward and ten steps back. Every celebration was often met with a new reality.
“I remember when River graduated from NICU to the Special Care Baby Unit in December followed by his first proper bath. The little things were massive to us. Unfortunately, we ended up back to NICU days later due to River catching a virus, which could have been critical. He only spent two days in NICU then got moved to the PICU on the 17th of January where he stayed for 12 days.
“Soon after, we had another positive milestone moment. We saw River without any respiratory support for the first time. Seeing his full face again was beautiful. However, following this, he went on to have severe choking episodes and at one point stopped breathing in Rudy’s arms. A terrifying emergency intubation followed to save his life and he ended up back on a ventilator in PICU.”
Things continued to get worse for the family. A surgical procedure found that several parts of River’s small intestine were dead and had to be cut out. Around 20cms of intestine were removed at first.
“We had the dreaded chat with the doctors that he may not make it through the night following this surgery. River then went to theatre every 48hrs until the following Saturday. In total they removed 57cms and put a new feeding tube in called a Peg-j. By a miracle he did not need a stoma. The doctors, nurses and surgeons were all in shock.”
Roseann and Rudy were prepared for the long recovery, and River had lost all his core strength and head control. With the help of the Physiotherapy and Occupational Therapy Team they got a plan in place to help regain the strength he once had. The months ahead were full of more set backs including sedation, more ventilation and PICU stints. But, after perseverance and patience, River defied the odds.
“On the 11th of July, we made our first journey home as a family. We’re experiencing all the firsts that a mum would with a newborn. It all feels so strange. We have noticed a huge leap in River’s development in the short time that he has been home already.
“He has a long journey ahead of him. But at the end of the day after all the trauma, pain, tears, stress and heartbreak we endured…we finally get to have our boy home with us, where he belongs.”
Roseann stressed her gratitude to all over the teams involved in River’s care.
“We can’t thank all the teams enough for everything they have done for us and River. Dr Haythem Kubba Rivers, ENT surgeon and the rest of the ENT team, Gastroenterology, Surgical, Respiratory, Dietitians, Complex Feeding Teams, Cardiology, Physiotherapists (neurological and respiratory), Occupational Therapists, Special Feeds Teams, Theatre Recovery Team, SALT (Speak and Language Therapists), The wonderful women from the Play Team.
“All the Consultants and of course last by no means least, the nurses, students to seniors in NICU, SCBU, PICU, WARD 3A, WARD 3B. Thank you, thank you, thank you.”
