Parents’ experiences of neonatal surgery

Rebekah

Brief outline: Rebekah had her third daughter via a caesarean. Initially, she seemed a healthy baby, but was diagnosed with intestinal atresia* after she had trouble digesting her food. She had surgery to give her a stoma and then later to re-attach the bowel.

Background: Rebekah is married with three children who are all under the age of 3. She works as a wedding florist and is from New Zealand.

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Rebekah had her third daughter via a caesarean, she is a type 1 diabetic and was suffering from pre-eclampsia (high blood pressure) during her pregnancy. Despite the fact that scans had shown that her daughter had an echogenic bowel (a “bright” bowel on the ultrasound that can sometimes indicate cystic fibrosis), she was born at 34 weeks and initially seemed like a normal, healthy baby. However, she began vomiting a brown liquid after Rebekah breastfed her and was taken as an emergency to a bigger hospital. The next day she went into surgery, which made Rebekah very anxious as she didn’t know how serious it was.

Her daughter had a jejunal atresia*, a blockage in her small bowel. She was fitted with a stoma* and Rebekah was told she would have to have surgery at a later date to re-attach the bowel. Whilst recovering from the second operation to rejoin her intestines, her daughter contracted meningitis at 2 weeks old and was in a high dependency unit for about 65 days. Rebekah and her husband lived an hour away, and drove down to see her every evening which was very tiring. Rebekah rarely got to see the surgeons or doctors as they did their ward rounds in the morning, so she had to call the hospital to get them to answer her questions. She found communication with them difficult and she would sometimes have to wait a few days before the doctors returned her calls. 

During her daughter’s stay in hospital, Rebekah received a lot of support from family and friends, who helped look after her other two children. Eventually, she was able to bring her daughter home aged 3 months. 

Rebekah’s advice to parents is to remember that there’s an end and to “try and not let your mind run away with you because there’s no point in worrying about what hasn’t happened yet”. 

* Intestinal Atresia (Duodenal, Jejunal, Ileal or Colonic Atresia)
The term atresia refers to the situation when a baby is born with a blockage in the intestines. This may be a narrowing or a complete obstruction.  The blockage may be single or multiple. Three areas of the small bowel may be affected: the duodenum, jejunum or the ileum. When the large intestine is blocked, this is known as colonic atresia.

* Stoma 
Surgeons may divide the bowel in an operation and bring the two ends out on to the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal.
Faeces (poo) passes into a bag attached to the outside of the body.

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