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*.
Adam was reassured to see the surgeon who told him their daughter’s hernia operation had gone well.
Adam was reassured to see the surgeon who told him their daughter’s hernia operation had gone well.
Sonia: They wheeled me back feeding her like on this bed.
Adam: Through the whole hospital.
Sonia: And then the whole ward.
Adam: And then in the ward yeah. So she came round and I mean I was trying to look at Livvy and she had no interest in me. She fed for ages didn’t she.
Sonia: Well she’d gone like four hours hadn’t she so it was the longest she’d ever- at that age.
Adam: So I didn’t really get a look at her for another hour after that yeah it was- .
Sonia: Oh that was quite funny.
Adam: And you had a massive grin and you were crying coming round the corner.
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.
Michelle and Harry were warned their son might look quite shocking after his surgery. He was swollen and drowsy on morphine, but did not need to be given muscle relaxation medicine.
Michelle and Harry were warned their son might look quite shocking after his surgery. He was swollen and drowsy on morphine, but did not need to be given muscle relaxation medicine.
Harry: Still, still not very nice, eyes lolling in his head and.
Michelle: And he was really puffy wasn’t he?
Harry: Yeah and has got this big ventilator stuck in his mouth.
Michelle: Yeah.
Harry: That you can’t hear him you can’t hear him cry.
Michelle: He can’t cry, he can’t.
Harry: He can’t move his head so he looks, he looks very uncomfortable.
Michelle: Yeah they tried to, cos they said they want to avoid paralysing the body from the neck down so what they did kind of help preserve the stitches and help preserve some of the work, the good work that they’d just spent five hours doing so they either go down the routes of lots and lots of morphine, which is what they did with him in the end.
Harry: To stop him moving around.
Michelle: To try and keep him so sedated that actually you don’t really, you can’t move that much or they have to go through drugs that basically paralyse the body which is slightly more severe so we didn’t really want to go down that route. So and they’d done a very good closure and we’re hoping that it would kind of heal in the best possible way and look a bit like a belly button but it, it wasn’t to be. So then that, that was all good wasn’t it, he was ventilated for a few days and the wound was redressed and then sadly he’d got an infection in his wound and so he got e-coli which destroyed a lot of the surrounding skin and so his wound was very, very poorly for quite some time.Amy E’s daughter had to be given muscle relaxation medicine so that she didn’t pull out vital breathing tubes.
Amy E’s daughter had to be given muscle relaxation medicine so that she didn’t pull out vital breathing tubes.
Oh yeah, yeah so he basically was like - best case scenario, got all the bowels back in put them back together and he was quite realistic, he said, ‘I’m not sure if it will actually properly work but it seems to have done the trick’, it was almost like he was a bit like I’ll just try this out, you know what I mean, but I was just so happy cos I thought that’s the best, that’s the best case scenario so it was like complete elation like my God yes it’s worked. He said the next day ‘Just see if she actually has a poo,’ cos that means that it’s worked which is a bit of a dramatic experience in itself. But she was still in the ICU unit at that point intensive care and she was ventilated cos the pressure on her lungs was too big but this is where she, she’s like I don’t need this in she was trying to rip it out, causing her throat to bleed I could see on the, on the monitor that it, the ventilator was breathing for her but she was trying to breath in between it so she didn’t really want it in. Then she, cos she kept trying to rip it out there was so much stitching up there they were worried she was gonna split it so then she was paralysed which was awful because she was crying and moving and then they paralysed her and she just kind of went [stares] like that.
Just while it healed?
Yeah so, it was, they said that the best, although it looks horrific to paralyse someone even a baby you can’t, you can tell an adult can’t you or a child at least you need to lie still but with a baby you can’t and if that rips open it’s just all gone. But I remember they did, gave her the drugs to paralyse her and she went like that and then she looked at me and went [flaps arm] and I was like ‘She just moved her arm,’ and the nurse said, ‘She can’t move her arm.’ ‘I’m promising you she just moved her arm,’ and I said, ‘Watch her,’ and she did it again so the nurse was like, right she’s having a bit more [laughs] so I was like, what a feisty little thing really, trying it on already. But yeah so she was in there, I can’t remember how many days she was actually in there I think she was in there a couple of weeks after and then she got moved to the next room which was high dependency and she’s still got the long line in, she’s still not eating. That was the other thing that was hard to deal with cos the nurses and doctors were saying she’s gonna be hungry she’s gonna feel hunger and she can’t have anything. So the only thing they let me give her was a tiny bit of sugar water on her lips but she could not, they said she’s got to get to through the hunger pains as well like a normal baby would be oh lovely load of milk, she can’t.
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.
Ally’s son was poorly after his surgery. It was a horrible night as she and her husband sat with him until he started to improve.
Ally’s son was poorly after his surgery. It was a horrible night as she and her husband sat with him until he started to improve.
And that night that’s probably the worst night that night they re-intubated him I don’t know what time about 10 ‘o’ clock and I don’t know whether by doing that or whether it was just a consequence but his lung then collapsed and his breathing and his sort of stats and his blood levels were all to pot so he was, he was poorly but he then seemed to steady off. So I went back to Ronald McDonald to get some sleep and then [husband] came to get me it must have been an hour later and said, ‘Oh they said he’s critical,’ that was awful, just awful. But so I went back over not knowing what to expect and they were doing the blood gases which is where they basically take a sample from his toe and they’re just checking what his oxygen levels are in his blood. And I think they were doing that every half an hour and the one that came back started to show an improvement and then he picked up from that point but it, it just amazed me how, how quickly it could turn one way or another with babies they’re just so delicate but yet so resilient. You think they’re doing okay and then he just went down and then very quickly came back up and that’s what they do when they’re monitoring and putting the right drugs in to manage all those all those statistics come out, those blood tests. But yeah that was a horrible night.
Did you stay with him all night that night?
Pretty much I think in a space of two or three hours, but then it’s quite quick how they rectify themselves so that reassurance is right, and the nurses are very good they will ring you if, for anything if you want them to. So yeah I think I stayed most of that night and then went and got some sleep the very early hours of the morning but then by the next day he’d picked up again and was steady. And I think it was about three days after that they started giving him food because before that he’d not been able to have anything.Amy found the setbacks after her daughter’s surgeries very difficult, but trusted that in the long term they were worth it.
Amy found the setbacks after her daughter’s surgeries very difficult, but trusted that in the long term they were worth it.
You know, it was tricky though because the surgeries put more pressure on her. She, she’d be fine before the surgery and then she wasn’t afterwards and it was hard because you’d see that, how much pressure it was putting on your child’s breathing or, you know, and how, how they weren’t coping with it. But it was necessary and, you know, those are the moments like was this the best course of treatment for her? Was this the way that she should have been treated here? But you could see the progress and, you know, I at some level, you give away that control and say, “I have to trust that they know the best thing for her”. They’re, you know, they’re looking at her, the whole picture of her medically. And doing the best thing for her.Alix and Antonio received a call very early one morning. They feared there had been a setback, but actually their son had been transferred out of NICU and was ready to come home.
Alix and Antonio received a call very early one morning. They feared there had been a setback, but actually their son had been transferred out of NICU and was ready to come home.
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.
Adam and Sonya’s daughter had a hernia operation. Feeding her was the main focus as soon as she came out of surgery.
Adam and Sonya’s daughter had a hernia operation. Feeding her was the main focus as soon as she came out of surgery.
Adam: And it was putting the pressure on you to diagnose in a way.
Sonya: Yes.
Sonya: Like is this normal does she appear normal when you only know what’s normal when the baby’s a three week old baby’s just come out of a general anaesthetic like how are you supposed to know what.
Sonya: And I - you know she is still sleepy so, and the anaesthetist is saying if she’s not feeding in ten minutes then we’ll worry now it’s fine because she’s still, I mean look at her she, I mean she was still like she’d just come round from a ten hour sleep, so I didn’t enjoy that bit it was that kind of initial rush of great relief and wow she’s fine to oh is she fine I’m having all these questions shouted at me with a clipboard [laughs].
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.
Alix and Antonio found it very frustrating to see their son go through surgery and then suddenly take a step back because of problems with his breathing.
Alix and Antonio found it very frustrating to see their son go through surgery and then suddenly take a step back because of problems with his breathing.
So that’s when the physiotherapy idea came from one of the surgeons, sorry one of them, I think it was one was between the surgeon team because they were consulted every day, Miss [name] came every day to see [son] after surgery and they it was the surgeon team and the paediatric team, the paediatrician team to discuss about this physiotherapy. And similar as the days before the surgery he was very poor on the Thursday and because of the lungs collapsing they collapsed one twice, the big one twice and the small one once. then on Sunday morning we came back and he was back on his tummy and he was waking up and they said well we don’t know what happened the only thing that we did overnight was to change the tubes, we were changing the tubes form a 3.5 to a 4 and that, that well we follow the physiotherapy and that seems to be working. Because Alix was not happy with the nurses during the night or one particular nurse during the night. I don’t think it was the nurse, I think it was really the condition after surgery, the recovery after surgery. So that was on a Sunday he recovered and then from there on that’s probably day 17/18 from then, then on every single day it was one drip less, one sensor less, one tube less and then suddenly we saw the smile, because there was no tube. So it was it was the recovery was just so quick. And then that brought back the comment from the Spanish guy he said they are so fragile but they are strong inside and that’s tryst, yeh, so they can.
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.
Leanne found that she had held it all together until her daughter’s surgery day, but found the aftermath really difficult to cope with.
Leanne found that she had held it all together until her daughter’s surgery day, but found the aftermath really difficult to cope with.
* 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.
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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