Parents’ experiences of neonatal surgery

Feeding the baby before and after neonatal surgery

Babies who need neonatal surgery often have complex feeding needs, both before and after surgery. Although some may be able to breastfeed or take a bottle, they may also be fed breastmilk or formula by a tube through the nose, directly into their stomach (NG tube)*, or by total parenteral nutrition (TPN)*. In some conditions, babies may not be able to absorb breastmilk.

Breastfeeding a baby that was either born prematurely or with complex health needs was not straightforward for most of the mothers we spoke to, especially if they themselves were unwell or recovering from surgery. In the end, some mothers managed to establish breastfeeding, but many were not able to or decided it was best for them and the baby not to keep trying. 

Shanise tried to breastfeed her son, but he couldn’t latch on. She felt guilty, but said “sometimes you just can’t do it”

Breastfeeding

Claire said, breastfeeding is a “big deal, because you feel like you can’t do anything for your baby” and many mothers expressed similar feelings. When their baby was critically ill, and being cared for by expert staff in neonatal intensive care (NICU)*, it was the one thing they felt they could do as a mother to try and help their baby. “I couldn’t do anything else for my baby” Barbara.
Victoria said it was the worst and the best thing – a “chore” to express, but the best thing she could do for her premature son.

Angie and Luke’s son was diagnosed with Hirschsprung’s disease*. There was a risk of him developing a condition called necrotising enterocolitis (NEC)*, and they had been told that breastfeeding was better protection against it than formula milk. So for them, “breastfeeding was really a life and death thing”. They eventually found a lactation specialist to help them, because they did not feel the hospital staff were able to give enough specialist advice.

Expressing

If their baby was premature and/or being cared for in NICU, mothers who wanted to breastfeed started off by expressing milk in the hope that this could be given to their baby, and that they might be able to breastfeed when they were stronger and fitter. Many mothers we spoke to persevered for weeks to develop their milk supply. It was exhausting, time consuming and often miserable, being in small rooms with breast pumps on their own for hours. Hayley’s son was very ill with exomphalos*. She kept expressing for 3 months, but said, “it’s kind of soul destroying you’re really alone in it, especially in the middle of the night, not even your baby’s there, it’s really, really difficult.”
Rebekah became skilled at expressing milk wherever and whenever she was, so that her daughter had a good supply. “It’s a big joke with all my friends…I will express anywhere so I will have a little back pack and I just have an electric expressing pump.”

Support for breastfeeding

Some mothers we spoke to felt they had been well supported in expressing and breastfeeding. Vanessa took her son back into hospital for his operation for Hirschsprung’s disease when he was 10 weeks old. She had been breastfeeding at home and really appreciated the support she was given back in hospital. Nurses opened up an empty ward for her and another couple of mums to use to breastfeed and stay in.
Ally’s son had gastroschisis* and was in NICU and then a high dependency unit (HDU)*. Nurses supported her to express milk for him, which they fed through a pipet and then a bottle. 

“Yes expressed milk, I did try to breastfeed him and again staff were lovely in trying to make that happen but he just didn’t get it, he couldn’t latch on so we’d just feed him from a bottle, again throughout the day I would do all his feeds.” Ally

Not enough support

But some mothers didn’t feel as though they received enough support in their efforts to breastfeed their babies. Some NICUs and paediatric surgery wards did not seem to parents to be well enough equipped or to see it as a priority. Angie and Luke were very disappointed that when they took their son back into hospital for his operation for Hirschsprung’s disease, the promised breast pump for Angie to use was not available. Barbara was upset that when she was still expressing a midwife tried to order her a hospital meal for breastfeeding mums, but the breastfeeding support nurse assumed she didn’t need it as her daughter was in an incubator, she said, ‘but she’s not breastfeeding, is she?’ (See ‘Neonatal surgery- parents’ experiences of communication with health professionals’).
Feeling the pressure to breastfeed and support to stop breastfeeding

Some mothers felt that there was too much pressure put on them to breastfeed or express for their baby. Shanisse tried breastfeeding her son, who had gastroschisis, for over a week, but it never really worked. She felt that there was too much pressure put on her and she was made to feel guilty. Mary’s son had a bowel operation and a stoma* made in the first week of his life. Some babies with a stoma are not able to tolerate breast milk and Mary felt that the pressure she was put under to express milk for her son was inappropriate.
Julie was pleased that staff encouraged breastfeeding but were also very supportive if people decided it wasn’t for them. Hayley wanted to give up expressing and move completely to formula and was grateful for the support of a particular midwife. “I just would like ask, saying to the doctors, “Please just let me off the hook, and they’re like, “It’s not for us to decide that”. And then I think it was [midwife] who was like, “just let it go, you spend more time with him”, you know.”

In the end, some babies are too unwell or unable to breastfeed

Despite their best efforts, in some cases babies were too unwell to breastfeed, or unable to tolerate breastmilk and needed a special formula milk that they could digest more easily. Nicky struggled for weeks to build up her milk supply but in the end her son was put on a specialist formula milk as he wasn’t able to digest breastmilk. She was devastated. Joe tried to breastfeed her daughter but her exomphalos and heart condition meant she was too weak to really manage. Both Ally and Zoe tried to breastfeed their babies (both with gastroschisis) but neither ever really latched on.

Breastfeeding breakthrough 

For some mothers we spoke to, there was a breakthrough. Amy was “ecstatic” when after 2 ½ months of expressing, her daughter was able to start breastfeeding. It was a really bonding moment for them, and in the end she breastfed her for a year. Lucy felt it was a real accomplishment to have establishing her milk supply having been separated from him while he was in NICU, and for her son with Hirschsprung’s disease to start breastfeeding. “I’d managed to bring my milk in and that was, my major accomplishment was getting my milk in, cos I’d spent so long without him and having to bring it in and I’d spent a lot of time, I was a full time milking machine really wasn’t I, just constantly trying to get it in.”

*Footnote definitions:

Nasogastric (NG) tube
A tube placed through the nose into the stomach. This may be used to drain the stomach contents after surgery or to provide milk when babies are not able to feed fully by mouth.

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

Neonatal Intensive Care (NICU)
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.

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 (pooing) normally.

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. 

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.

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.

High Dependency Unit (HDU)
Babies in an HDU require slightly less monitoring and medical support than in an Intensive Care Unit (ICU). They may still need some help with breathing.

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.

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