Diagnosed with Long Gap Oesophageal Atresia Type B, then Diverticulitis in the colonic oesophagus

Belinda was born at 36 weeks gestation as the second twin on the 1/8/1979.

My pregnancy had become complicated with polyhydramnios, preeclampsia and threatened premature delivery. I was induced as my health and the babies was at risk. Belinda was 1400gms birth weight and at birth showed respiratory distress so the staff were quickly intervening with her care.

They were both transferred to NIC where a tube was attempted to be put down Belinda’s oesophagus and consequently she was diagnosed with Long Gap Oesophageal Atresia Type B. Early surgery to place a gastric tube into her abdomen and an oesophagotomy were done to enable her to be fed and reduce the risk of further pneumonia.

It was not until a couple of weeks later after having aspirational pneumonia that the Drs diagnosed Tracheo Oesophageal fistula from the proximal part of the upper stub of the oesophagus. Included in the overall diagnosis was Tracheomalacia, small holes in the cardiac septum and low birth weight. Belinda was transferred by air ambulance to The Children’s hospital in Sydney in a serious condition. Meanwhile trying to maintain contact with her twin sister was very difficult as she was in another hospital NIC in Canberra so as new parents it was an emotional and exhausting time.

Over the next 4 months Belinda had to undergo further surgeries which she was able to recover from. She put on weight and was soon able to go home. Her twin was already home from hospital so it was a very busy time having a tiny baby with me while at the hospital with Belinda.

At home, care rotated around 1-2hrly tube feeding, overnight drip feeds, and allergies to most milk products causing severe pain, bloating and total discomfort with feeding. Meanwhile I was breast feeding Shelley (Twin1) and expressing to feed Belinda as well. Initiating sham feeding or at least taste testing of different foods was important so that when she was reconstructed she would have some semblance of taste and texture.

Recurrent colds were also an issue which obviously made her oesophagotomy drain more saliva and more often having to changing her clothes.
Dealing with the G Tube was interesting and I became quite adept in replacing the tube after it had fallen out or being pulled out accidentally.

At about 18 months

At about 18 months of age surgery to repair and make an oesophagus from the outer curvature of her stomach was attempted but over the next couple of weeks Belinda became extremely sick and diagnosed with Necrotising Enterocolitis. The surgical repair of the oesophagus failed and Belinda was placed in a coma and on a ventilator and her gastric tube for feeding was replaced as was her Oesophagotomy.

She was a seriously ill little girl but seemed to always bounce back. Such a determined fighter to survive. A few months later she she was sent home again and the girls were able to ,interact with each other and life as a family became a bit more normal!!

The hardest part of Belinda’s care was introducing foods that didn’t cause some sort of gastro intestinal pain and diarrhoea. Having a background in nursing made a difference with Belinda’s care as more often than not I was telling the Drs what I needed for her ongoing care.