At 37 weeks, Alex arrived happy and healthy at Waikato Hospital. But just hours after they were transferred to River Ridge East Birth Centre, Alex developed breathing problems and was admitted to Waikato Hospital’s Newborn(neonatal) Intensive Care Unit(NCIU) for two weeks.
“In NICU he would feed and had low blood sugar so they gave him formula via a nasogastric tube (NGT),” Connie says. “I was trying to breastfeed too but he had a bad tongue tie which hadn’t been picked up. He was also dairy intolerant but the main problem was severe gastric reflux.”
Over the next five months, Connie received help from The Waikato Family Centre, Perinatal Mental Health, Mothercraft and her GP as she tried to get Alex to feed. “Every feed was a battle,” says Connie. “He would kick and scream in pain whenever I tried to feed him”. Meanwhile, Connie herself was suffering from extreme anxiety and having trouble bonding with her baby.
Alex’s weight had plummeted off the growth chart before he was fitted an NT but respite for an utterly overwhelmed Connie was short-lived. Two days later, Alex was admitted to hospital with Rotovirus, where he and Connie would stay for two weeks.
It was during this stay that Connie met True Colours counsellor, Mary Orpin after receiving a refferal from Waikato Hospital. “We were in complete isolation, when Mary gowned up and came in to talk to me,” recalls Connie.
Over the following six months, Mary’s support became instrumental in Connie and Alex’s NGT journey. “I would freak out every four hours when it came time to feed Alex, knowing it would be a battle and that he’d be screaming out in pain. Mary helped me get through this terrible time; she was so encouraging and provided me with the strategies and support I needed.”
Connie and Mary would meet weekly or fortnightly and each time the focus was on Connie.
The difference with True Colours was that the focus was one me, what I was going through; it wasn’t just about Alex and his medical needs.
Mary had a holistic approach, she was aware of the other needs we had as a family and was able to refer us to appropriate supports”. Mary also accompanied Connie to medical appointments for Alex, providing support and helping her understand some of the “medical jargon” involved.
At 11 months old, Alex’s weight had increased and his NGT could be removed but he had developed a bottle aversion. ” This added to my fear and anxiety,” says Connie. “I was really afraid and didn’t want the tube taken out but I worked through this with Mary and together we devised a coping strategy. We developed an in-depth plan regarding the removal of the tube, and support for me around that happening.
Mary was instrumental in helping in multiple areas of life and helped me develop resilience and problem solving when I was at my wits end and ready to give up.
“I have been able to use these skills following the NG tube removal to help me mange the ongoing stresses and challenges of parenting.” One year on and things have improved, but Connie still has her tough days. “It’s great to know I can always call Mary when I need advice or support. There is so much I could say about Mary; she is awesome.”
Severe Gastric Reflux
Gastric Reflux is a condition where the muscular valve at the top of a baby’s stomach doesn’t close properly, allowing food and milk to be regurgitated. As the food travels back up the oesophagus, the acidic content can burn the tract causing severe discomfort to the child.
While many babies suffer from reflux, in some cases such as Alex’s it can be extreme resulting in other complications such as being unable to gain weight, which means food must be given via a nasogastic tube(NGT). The pain caused by the reflux causes the baby to cry(or scream) and pain management is difficult. This can often make it hard for parents to bond with their baby due to the anxiety and stress caused by the condition.