Parents’ experiences of neonatal surgery

Finances and working life when a baby has neonatal surgery

Parents described how having a baby who needed surgery sometimes had a big impact on their finances and working lives, both when their baby was still in hospital, and after they came home.

Financial impact

“It’s expensive being in hospital. Spend a week in hospital and essentially you’ve spent a few hundred pounds.” Mike

Several parents talked about the unexpected costs of having their baby in hospital for long periods of time. As well as paying bills at home, there were the extra costs of petrol, parking and hospital food. As Mike and Fiona said, “you have to pay the bills and everything is carrying on as normal, but nothing is normal.” 

Many parents were lucky enough to be provided with charity-funded hospital accommodation that meant they could stay near their baby. But those who were living at home described the extra expense of petrol, train, bus and taxi fares and hospital parking. Several parents were in debt afterwards and others relied on support from family and friends.
Disability benefits

Some parents were eligible to claim disability benefits, such as Disability Living Allowance (DLA). But even if they were able to claim for help, it didn’t necessarily cover all the costs. Mike said, “You don’t really get help for as long as you need it.” Some parents did not realise they could apply for benefits, and so lost out on hundreds or thousands of pounds worth of help when they most needed it.
Impact on maternity leave

Some mothers talked about how their baby’s early arrival had knock-on effects on their maternity leave. Victoria’s son arrived 15 weeks early and so she lost several months of full time pay, as well as spending most of her maternity leave visiting him in intensive care in hospital after he developed necrotising enterocolitis (NEC)*.
Impact on working life while baby is in hospital

Coping with their baby being seriously ill in hospital, while still needing to work, was a real challenge. While mothers were often on maternity leave, fathers had to juggle shorter periods off with paternity and compassionate leave. Louise described how her husband had to drop everything during the period when their son was in hospital (with congenital diaphragmatic hernia*), and then did shorter days for a while. Nicky said her husband’s work were very supportive and let him work from home so he could juggle hospital visits to see his son. Matt was also supported by his employer to work at home while his son waited for, and recovered from, his operation for Hirchsprung’s disease*. Ally’s husband works for the prison service and they were very supportive giving him extra leave while his son was in hospital in another city. But not all parents were so well supported by their employers. Zoe’s partner was not given compassionate leave, so had to use all his holiday entitlement up to be with his partner and daughter in hospital, which was a three hour drive from home. Julie’s partner was self-employed and didn’t get paid when he didn’t work, so they had to rely on credit cards to pay the bills.
Longer term impact on work

Many parents described how their baby’s health condition and surgery had long lasting impact on their working lives. Some mothers had supportive employers, and were able to take extended maternity leave. But several had either given up work, taken redundancy or reduced their hours and role to be able to look after their child at home. Clare described how hard it was to convince her employer that she needed the flexibility to be able to drop everything if nursery called and her son needed her. Jane hadn’t been able to put money into her pension for years.
Donna’s son was diagnosed with Hirschsprung’s disease. She took voluntary redundancy because, “we didn’t know where he’s gonna be in a year, we didn’t know”. She was touched that at her leaving drinks she found out her colleagues had all researched her son’s condition online. Joe’s third daughter had exomphalos* and complications. She took extended maternity leave from her job in pre-school management, and was going to take a step down from her managerial role when she went back. Sally-Anne and Simon’s son was 13 when they spoke to us. His health has severely affected their working lives. Sally-Anne would have loved to go back to work as a nursery nurse, but the costs of looking after her son when he was tube fed as a baby meant that it didn’t make economic sense. It was a financial and practical decision. Her husband Simon has tried employment and self-employment as a builder, but similarly has found employers could not tolerate (or cope with) the uncertainty of what emergency care their son might need.
*Footnote definitions:

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.

Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected. 

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

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.

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.

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