Meeting other parents when a baby has had neonatal surgery (online and face to face)

Finding support from other parents who had been through similar experiences (either online or face to face) was described by many parents as absolutely crucial to helping them to cope and understand more about their baby’s diagnosis.

‘Find parents. My absolute number one thing’ Claire

‘That was my number one support during that time with all these other mums who’d gone through it.’ Amy

‘Kept me sane, I think, or sane-ish’ Jane

Emma’s son was born with Oesophageal Atresia (OA) with Trachea-Oesophageal Fistula (TOF)* and said other parents were important as unlike friends ‘they understand what the terminology is and how he’s doing and I think you need someone that you can talk to that you can relate to in this situation.’

Emma’s son was born with OA with TOF and other complications. She said she really needed to find people in similar situations to help her through the dark places.

Age at interview 30

Age at diagnosis 28

View profile

Feeling other parents are the only people who can really understand

Parents often felt very isolated by their (often extended) experiences in hospital and because their baby had a rare condition (see ‘Impact on the family and friends as a child grows up after neonatal surgery‘, ‘Emotional impact on parents when a baby has neonatal surgery‘ and ‘Emotions, support and counselling when a baby has neonatal surgery‘). They felt that while their friends and family were supportive, they were not able to fully understand what they were going through. Parents also felt outsiders at ‘normal’ parent groups, which further isolates them. Clare said, ‘When you’re kind of going out with your mums groups and you’re trying to make those connections and share your experiences and things, it really tainted all of that because I started to feel like I had to hold back on certain things because I started to feel like I was sounding like a broken record.’

Amy E’s daughter had gastroschisis* and was in neonatal intensive care (NICU)* for several months. She met another mother in NICU who became a great friend. ‘She was the only other person in the world I felt that understood what I was, what I felt, and she still is to some degree.’ Amy E

Finding parents online who had a baby with the same condition, or forming bonds with other parents while in hospital, were described as a lifeline. Fiona and Mike spoke about how their experiences in NICU with their daughter who had exomphalos* and complications had left them ‘a bit mentally frail’. While they acknowledged counselling might have been a good idea, it was hard to find the time. Finding other parents going through something similar was a good strategy instead. ‘You’re almost better off again finding parents in a similar situation and going down that route.’ Mike

Joe found a parent who lived close by whose daughter had also had an exomphalos a few years earlier. She had met her online, where she felt people knew her better than her actual friends.

Age at interview 36

Age at diagnosis 34

View profile

Support group meetings may be available in some places. Vanessa met other parents who had a baby with Hirschsprung’s disease* through a support group set up by her local hospital. She said that meeting other parents, ‘just sort of makes it a bit real, you know, that you aren’t the only one and just, you know, to meet actual people.’

Other parents offer hope

Many parents drew strength and encouragement from being able to read or hear other parents’ experiences, and the experiences of older children with the same condition. Sally-Anne later found support online, but said that at the time she would have liked support from ‘somebody who’s been there, who’s walked in your shoes, who’s seen the light at the end of the tunnel. Because when you are going through it there is no light.’ Parent’s experiences often contrasted with the doom and gloom they read in other sources of information. Joe said, ‘you get the faith and the hope and the knowledge that it works out sometimes. Sometimes it doesn’t but sometimes it does.’ Donna said her toddler’s swimming teacher had put her in touch with another mum whose son also had Hirchsprung’s disease like her son, and they shared stories.

However not all parents were reassured by the experiences of other babies. Louise was wary of ‘false hope’ during her pregnancy with her son who had congenital diaphragmatic hernia (CDH)*.

During pregnancy, Claire was introduced to another family with a son with exomphalos. It was lovely to see a happy little baby rather than just the gloom and doom of scans.

Age at interview 34

Age at diagnosis 33

View profile

Barbara was wary of bad news stories and good news stories, as she felt they were not relevant to her daughter’s progress and recovery from gastroschisis.

Age at interview 44

Age at diagnosis 38

View profile

Friendships forged in hospital

Not everyone felt able to strike up friendships with other parents in hospital, it was just too emotionally draining. Amy said, ‘I felt like I couldn’t give them anything’. But others did make friendships that were incredibly important in helping them through such a difficult time. Mary found a ‘lovely camaraderie’ with other mothers that she met while her son was in hospital. ‘It’s what you share with other mums who’ve had babies in intensive care, it’s kind of quite profound and I think we’ll probably keep in touch with some of those mums and babies for a long time.’

Zoe said she made lifelong friends while sitting with her daughter in hospital. Those relationships really helped her through.

Age at interview 24

Age at diagnosis 22

View profile

Finding support online – positives

While support from other parents in hospital was important, finding other parents through online support groups was also valued, particularly in connecting parents to others who had a baby with the same rare condition. While occasionally parents did meet someone nearby who also had a baby with the same condition, mostly parents were very isolated, so finding a group of parents online (often from all around the world) with whom to share their experiences and research symptoms was a lifeline. It helped them feel they were not alone, and helped to have someone to talk to on the dark days.

Amy’s daughter had exomphalos and finding other parents through an online forum was her number one support during that time.

Age at interview 39

Age at diagnosis 33

View profile

Joe’s daughter also had exomphalos and she described the emotional support and shared knowledge that she found online as invaluable. ‘It’s asking a forum of parents who’ve been through exactly what you’re going through. It’s like sitting in a room with 500 parents whose kids have got the same experience and the same problem.’

Finding support online – negatives

Others were wary of going online for support and information. They didn’t feel they wanted or were able to share their experiences and were not strong enough to absorb others’ distress. Barbara said, ‘I felt like sometimes I wanted to share and then it was all just too raw’. She ultimately found that support from friends who helped cook dinners and look after her older daughter was what worked for her and her husband. Leanne’s daughter was diagnosed with Hirschsprung’s disease. She looked online in the early days but ‘it was just too much for me to take on at that time and I remember thinking I can’t cope with this.’ Nicky’s son was born very prematurely and then developed necrotising enterocolitis (NEC)*. She went online cautiously as she knew there would be lots of ‘rubbish’ as well as helpful information. In the early days she also found the ’emotive content’ more than she could cope with.

Nicky found reading other people’s stories too hard in the early days when her son was still very unwell.

Age at interview 39

Age at diagnosis 39

View profile

Matt and Donna’s son had Hirschsprung’s disease and they have found that they dismiss the information and stories they read online. They don’st want to be near all that worry.

Finding support online – giving back

However many parents spoke very positively about the ongoing support they had found through online forums, and how they continued to contribute many years later as a way of supporting other parents faced with similar challenges. Jason and Lucy have a son with Hirschsprung’s disease ‘Obviously everybody is different but I do think taking other people’s experiences, taking those on board I think that does count for a lot. And I think we’ve learnt a lot off other people, and I like to think that we’ve been able to pass on some of that to others in our same situation as well.’

For links to information and parent support groups see ‘Resources‘.

Hayley and Thomas had a son with exomphalos who died when he was 7 months old. They are still involved with the online forum, as they want to help others who are going through the same experience.

*Footnote definitions:

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.

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.

Oesophageal Atresia (OA) with Trachea-Oesophageal Fistula (TOF)
OA is a rare condition where the oesophagus (gullet/foodpipe) is not connected to the stomach and is blocked. This can be associated with TOF, where the oesophagus (gullet/foodpipe) is joined to the trachea (windpipe).

An abdominal wall defect, that occurs when the baby’s tummy wall does not fully develop 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.

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.

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