Parents’ experiences of neonatal surgery

Post-surgery recovery & setbacks after neonatal surgery

There was huge relief for parents when their baby came back from the operating theatre. For some parents, recovery was straightforward. Adam said he had 15 minutes of worry and then saw the surgeon who told him all had gone well with his daughter’s hernia operation*.
After major surgery, progress was often not seamless. Many parents described an initial period of setbacks, before progress could be seen. 

Parents were prepared by the surgeons that their baby would probably be on morphine, and might look puffy and unwell after the surgery. It was sometimes important that they were kept very still so they didn’t pull on and dislodge their tubes and medication. Harry and Michelle’s son was very swollen and drowsy after his gastroschisis* surgery, so doctors sedated him. Amy E’s daughter, who had also had major surgery for her gastroschisis, kept trying to pull her ventilation tube out, so she had to be sedated. Amy E found this upsetting.
Often the first 24 hours after surgery were very difficult as babies stabilised. Ally’s son had surgery for gastroschisis and the first night was very challenging for him.

Amy’s daughter had multiple operations for her exomphalos*. As surgeons tried to squeeze more of her bowel back inside her there were times when her condition got worse before it improved. Amy had to trust that they knew what was best for her in the long term.
Several babies had to stay on an intensive care ward (NICU or PICU)* for a few days or weeks as their condition stabilise and then started to improve. Some parents were in for a long haul of several weeks, but others were surprised when their baby’s condition improved quickly.
Feeding and pooing

Getting the babies feeding and pooing was often the main focus after surgery, particularly as most often the surgery had been on their bowels. Some were not allowed to start feeds for a few days as their bowel recovered, and were fed via a vein with a special mix of fluid and nutrients called parenteral nutrition (TPN)*. Others were able to start feeding straight away. Matt and Donna’s son had surgery for Hirschsprung’s disease*. He was not allowed to feed for a couple of days but then “he seemed to bounce back”. A few of the babies had a temporary stoma* fitted and needed to come back for further surgery at a later stage.
Major setbacks

Some babies recovered well from their operations, but others had major setbacks which meant they stayed in hospital for weeks or months after their operations, moving between intensive care and high dependency wards. Several babies developed infections. Amy's daughter had MRSA and was put in isolation, Rebekah’s daughter developed meningitis and was also isolated. Nicky’s son had repeated episodes of infection. Michelle and Harry’s baby developed an infection in his wound that was treated with medical manuka honey.

In addition to problems with their digestion, there were some babies who developed other medical complications. Often babies struggled with their breathing and needed to be put on a breathing machine called an oscillator* or a standard ventilator which they then needed to be weaned off slowly. Alix and Antonio’s son had a collapsed lung after his operation for congenital diagphragmatic hernia (CDH)*. They were very disheartened, but physiotherapy helped in his recovery.
Often there was not one individual thing that was very serious in itself, but the combination of several issues in small, weak babies that made things so dangerous for them. Mike and Fiona’s daughter had several episodes when her heart stopped (cardiac arrests), infections and problems with her breathing, possibly caused by a floppy windpipe (tracheomalacia)*. “That was the interesting thing about this, each one of her problems was actually fairly minor but because there was a few of them, it became major and that’s what set it off each time.”

Hayley and Thomas’s son was born with exomphalos*, but also suffered from several other complications and infections. At 5 months his condition deteriorated dramatically and he never really recovered, and he died aged 7 months.

Sustaining themselves

Some parents found it terribly hard keeping strong through the ups and downs of their baby’s progress. Nicky described how they kept hitting a “brick wall” with her son’s progress. He would start to get better, and then get another infection and take a backwards step. He had several periods of severe infection before he finally made a breakthrough and was well enough to come home. There were periods when Nicky felt, “how many times have we been through this circus?”

Amy said, “It was two steps forward, sometimes it was three back, not just one, and it was hard ‘cos you just wanted to move forward. You don’t want any back. You just want to plough forward. You want to see the end. You want to close those hospital doors and say goodbye.”

Leanne said she found it very hard to keep strong after her daughter’s surgery for Hirshsprung’s disease. She had been so focused on keeping strong until the day of the operation, she hadn’t really prepared herself for the recovery period and complications afterwards.
*Footnote definitions:

Gastroschisis
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. A hole is present next to the umbilical cord through which the baby’s intestines protrude into fluid around the baby while in the womb, and outside the baby’s tummy after birth.

Exomphalos 
An abdominal wall defect that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.

Neonatal Intensive Care (NICU) or Paediatric Intensive Care (PICU) 
A unit for critically ill newborn babies and infants who need the highest level of nursing and medical care. Babies in NICU often require support for their breathing. Those undergoing major surgery will often be looked after in a NICU. PICU is for older babies and children.

(Total) Parenteral Nutrition (TPN)
TPN is nutrition delivered directly to the blood via a vein.

Hirschsprung’s Disease
A rare disorder of the bowel, where the nerve cells do not develop all of the way to the end of the bowel. The section of bowel with no nerve cells cannot relax and it can lead to a blockage. Babies all need surgery and may have ongoing problems with stooling normally.

Stoma 
Surgeons may divide the bowel in an operation and bring the two ends out onto 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.

Hernia
A hernia occurs when part of the body (usually the intestine) protrudes into a place where it should not be. An inguinal (groin) hernia in babies happens when a sac that joins the tummy to the scrotum or labia does not close, allowing the bowel (or ovary) to bulge into it.

Ventilator 
A ventilator gives oxygen and air into a baby's lungs. It can take over the work of breathing completely or help support the baby's own breathing. There are several types of ventilation. Oscillator is a type of ventilation, that uses a very fast rate and makes the baby’s chest vibrate instead of going up and down.

Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.

Tracheomalacia 
Is where the repaired section of windpipe becomes floppy and makes breathing difficult.

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