Parents’ experiences of neonatal surgery

Emotions, counselling and support when a baby has neonatal surgery

The emotional impact for parents of having a baby who needed surgery was often huge, during their pregnancy, when they were in hospital after the baby was born and once they were home. The experience of spending time away from home with the baby in hospital could feel very isolating. Some mothers said they felt guilty and a few said they suffered from anxiety, panic attacks, and flashbacks. Some mothers we spoke to were offered anti-depressants and therapy. Fathers were also deeply affected.  

Amy’s daughter had exomphalos*. She said she was unprepared for the strength of her emotions and didn’t know how to cope.
Thirteen years on from finding out her son had exomphalos, Sally-Anne said she could still feel the “raw emotion, and I don’t think that will ever go away.” Nicky’s son had been born prematurely and developed necrotising enterocolitis (NEC)*. She held it together for so long, and then “fell apart”. She said looking back, it was no surprise.

Isolation

Several parents talked about how isolated they felt while they were in hospital with their baby, and how this impacted on their emotional wellbeing. This role more often fell to mothers, as women’s maternity leave and pay rights are usually more extensive than men’s. But fathers also experienced loneliness trying to look after other children at home or going back to work to keep earning enough for the family. Parents were often in hospital sitting by their baby’s cot side for weeks or months on end, eaten up with worry. Once home, there were the challenges of looking after their baby and being around other parents and babies was very challenging for some. Jane couldn’t be around other babies, because it was too upsetting when her baby was so ill – “I was a bit cut off I think”. Shanise said, “I felt really isolated and I’ve never felt that lonely ever, ever before, like it was horrible.”
Emotional and mental health impact

Not surprisingly strong emotions were common around the time of diagnosis. But longer term emotional and psychological impact was also an issue, including anxiety, flashbacks, post-traumatic stress disorder (PTSD) and panic attacks. Some parents were prescribed anti-depressants. Donna was recently home from hospital with her son who had an operation for Hirschsprung’s disease*. Her mum had recently died, and she had taken voluntary redundancy “I’m struggling with my anxiety”. Several mothers we spoke to either had a diagnosis of PTSD, or were concerned they were suffering from it. Joe said, “yeah post-traumatic stress is definitely something I’d say I definitely suffer from it, I know my teenage daughter definitely suffers from it cos she can’t stand to look at [Name]’s tubes, she can’t stand to be in the room when the children are crying.”
Sources of support

Parents described finding support from a variety of different sources:
  • Other parents
Access to online communities of parents from around the world who had had a baby with a similar condition was invaluable as a source of support. “The main support really, throughout the pregnancy, has been other parents going through the same thing.”(Claire). Amy clearly remembers another mum with an exomphalos* baby saying to her, “‘This will be a memory one day.’ And she was right and I needed to hear that at that time.” 
  • Family and friends
Family and friends were central to supporting parents emotionally through the stressful weeks and months their baby was in hospital and recovering. Alix and Antonio valued both the emotional and practical support they received from their family. It helped that they could do basic things like bring them food and clean clothes, as well as provide emotional support. Rebekah said it was incredibly helpful that family members could update others so that she didn’t need to text or speak to everyone. Victoria described her mum as her “right hand man” as she sat by her son’s cot side when her partner was at work. Zoe’s daughter was in a hospital several hours away from home, but her family were “always at the end of the phone”.
  • Staff
Nursing staff on the neonatal intensive care unit (NICU)* and other acute wards often played a vital role in supporting parents. Victoria said that the staff on the unit were amazing, encouraging her to take a break and look after herself, “They used to tell me off for monitor watching.” Shanise was starting to have panic attacks, and received a lot of support from one of the neonatal liaison staff who would sit with her and helped her through.
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Emotional support could also come from other members of the multidisciplinary teams and beyond. Amy received a lot of support from the play therapist who came to look after her daughter. Nicky drew a great deal on her faith during the dark months in hospital and felt supported knowing that the church community were praying for her baby. Mary and Joanne valued the visits they had from the hospital chaplain.

Once they were home, health visitors and GPs were another source of help. Jane really appreciated that her health visitor would come and see her at home so that she didn’t have to go to baby clinic with her daughter, as she found that very upsetting. 

Counselling and therapy

Several parents had been referred to, or sought out, counselling or therapy. This included counselling in hospital before they left and at home through their health visitor or GP. Donna was having cognitive behavioural therapy (CBT) (talking therapy), Nicky had telephone counselling sessions through the charity Bliss and Emma went to a group counselling sessions at the hospital. Julie had anti-depressants for periods of time. Fiona and Mike were offered counselling when their daughter was almost ready to leave hospital after several months. They were aware they had become institutionalised: “other parents said your children have to be weaned off the machinery and so do the parents.” Nicky said her counselling sessions were helpful, because it was great to have space to talk to somebody unconnected with the NICU and staff. “Yes, just that space to talk to somebody outside, disconnected. The staff on the unit were fantastic but there was only so far I felt able to go with them because you still needed to maintain that positive relationship.”
Some parents were just fine without therapy, but others felt they didn’t have time for counselling, although they knew they desperately needed it. Joe tried anti-depressants instead but they made her feel strange. Others had poor experiences with counsellors who they felt were insensitive or not appropriately experienced.
The impact of losing a baby

Sadly not all babies survive. Hayley and Thomas lost their son when he was 7 months old. They described the silence that engulfed them after he passed away, after the months of busy noise on the ward. He died on a Friday afternoon so they had a weekend of limbo before they could contact the bereavement services. Thomas said Hayley gets the “raw end of the stick” in having to talk about losing their baby more.
*Footnote definitions:

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.

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. 

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.

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)
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.

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