Communication with the various health professionals looking after their baby was central to parents’ experiences. The professionals caring for their baby spanned many disciplines – there were the surgeons, but also paediatricians, the intensive care nurses, specialist stoma nurses and other specialists further along, such as physiotherapists or nutritionists
Their babies were often very sick with a rare condition, and receiving complex medical and surgical treatments. So communication about how well their baby was doing, where he or she was going and what the plan was for treatment was very important. Parents described difficulties and challenges, but also examples of good, clear communication which really helped at a stressful and frightening time. They often were not able to answer parents’ questions, because everyone needed to wait and see how their baby would progress.
Parents interacted with many different professionals as there were often multi-disciplinary teams looking after their baby. Although surgeons or the pediatricians were ultimately making the clinical decisions, it was often the nurses who were the linchpin for parents, especially in the early days. Ally was happy that even if she missed seeing the surgeon on his ward round, she would be given feedback from the nurses. Rebekah said the nurses were her main point of daily contact, passing on what the surgeons had said.
Mary remembers having early conversations with the surgeon and not knowing what to ask. It was follow up conversations with the stoma nurse that she found more useful. ‘You don’t even know what to ask, it is all a bit like boom I think that is where I found the conversation with the stoma nurse probably a little bit more useful because you actually needed somebody to give you a biology lesson.’ Mary
Parents valued being listened to
While parents recognised that they relied on doctors’ expertise and judgement in planning their baby’s care, they really valued being listened to and feeling involved in their baby’s care.
‘They’ve been very understanding and patient and I think recognising as well our role as parents and, that we, you know, have opinions and experiences, and not devaluing what we’ve learnt from other places as well. You know, when I say, ‘I’ve talked to my friends on the internet and they wondered about this?’ they could be very dismissive of that, but actually I think they recognise that it’s a pooled source of knowledge that they can’t possibly have either.’ Claire
Jane had been in and out of hospital with her daughter for over 8 years. She said, ‘I would say 99.9% of the time we’ve been treated really well, like human beings, not just numbers, and that has made an enormous difference to the experience as a family.’ Sally-Anne and Simon really valued being made to feel ‘part of it, part of that team’ looking after their son while he was in hospital.
But parents didn’t always feel communication went so well. Barbara felt that the doctors looking after her daughter didn’t respect her wish to breastfeed, and had an attitude that parents were part of the problem rather than part of the solution, which frustrated her. Unlike Claire, Joe felt that doctors were very dismissive of the research and expert patient knowledge she had gathered from online support groups.
Being given choices
Parents were often not in a position to make any of the decisions or choices about their baby’s care. That was in the hands of the medical experts, although it wasn’t always clear who was making the final decisions as the teams were so complex. Amy echoed others when she said, ‘I didn’t always know what the lines of communication were, or who was really pulling the strings and who was making the final decisions on her care’. While parents understood why they couldn’t be given any choices, they did find it hard to have so little control.However, there were examples of small choices being offered to parents and where that was possible they really appreciated it. Sonya and Adam’s daughter developed a hernia* on one side of her groin and needed surgery. Before she went in for her operation, doctors gave them the option of having the other side of her abdomen checked for a developing hernia (a concern), and they were glad they took up the option as she did have one developing on the other side.
Asking questions and keeping parents informed
Being kept up to date with their baby’s care was very important to parents, especially when plans changed. They valued the opportunity to ask questions and have them answered. Louise said she was constantly asking questions but staff were very good at answering them all and reassuring her. She said she ‘probably annoyed the hell out of them, but wanted to know OK when he does this what is his next step, what has he progressed to, how long will he be doing that and how long will it take and things.’ Mary felt there was a delay in picking up her son’s weight loss, which prompted her to ask a lot more questions. Ally said it was the nurses in the high dependency unit (HDU)* who were really good at answering questions as best they could, or finding a doctor to answer them if they couldn’t.
Although health professionals often had to deliver bad news to parents, there were many examples of good practice in managing this well. Rebekah really appreciated the straight talking from surgeons about her daughter’s condition (a jejunal atresia*). ‘I quite like things in a lot of detail so that when doctors are talking to you sometimes they can do stupid talk because they don’t know how much you know medically, but I like to hear all of it and I don’t want broken down terms, I want medical terms because then I can go and look up what the medical terms are, see what it’s all about.’ RebekahSeveral parents gave examples of instances when they felt the communication with nurses, paediatricians and surgeons had gone particularly well and they felt well informed about their baby’s care. Emma’s son was born with several complex conditions, and was in neonatal intensive care (NICU)*. A nurse that she came to trust and like enormously was initially quite frosty, but explained afterwards that she was focused on getting to know the baby as well as she could, so she would know when he wasn’t right. Clare and James struggled to get a diagnosis for their son’s Hirschsprung’s disease*, but when they finally met with the surgeon, he was ‘spot on’ in his communication with them.
Several parents described frustrations with the communication at various stages during their baby’s time in hospital. There were often gaps in communication after ward rounds or operations when parents were keen to hear news. Some said that if they weren’t allowed to be at ward rounds, or weren’t present that day, it was difficult to get information from doctors, who they felt weren’t accessible. Nurses were able to give feedback but sometimes not answer all parents’ questions. Claire found the poor communication between the hospital she was being cared for postnatally and the children’s hospital where her son had been sent was distressing – ‘the communication there was not great and that was the worst bit’.
Rebekah felt that poor communication was the single most important thing she would have liked done differently during her daughter’s time in hospital. As she lived over an hour’s drive away and had two young toddlers at home, she often missed seeing the doctors on ward rounds. She developed a system of writing questions on pieces of paper for the nurses to ask. After her daughter’s surgery she was left waiting for several hours not knowing how it had gone.
Sometimes parents had a sense they were being drip-fed information when they would have preferred all the information up front. Some wondered if they were being protected from hearing in detail about what the side effects might be of the operation or condition. But doctors and nurses may themselves not know everything (see ‘Living with uncertainty before and after neonatal surgery‘ and ‘Understanding the diagnosis when a baby needs neonatal surgery‘). Emma would have preferred to have all the information up front rather than have it ‘sugar coated’.
But taking into consideration how sick their babies had been, and how long they had been in hospital, parents were on the whole very positive about communication with health professionals.
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.
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.
Intestinal Atresia (Duodenal, Jejunal, Ileal or Colonic Atresia)
The term atresia refers to the situation when a baby is born with a blockage in the intestines. This may be a narrowing or a complete obstruction. The blockage may be single or multiple. Three areas of the small bowel may be affected: the duodenum, jejunum or the ileum. When the large intestine is blocked, this is known as colonic atresia.
Extracorporeal membrane oxygenation (ECMO)
ECMO is the use of an artificial lung (membrane) located outside the body (extra corporeal) that puts oxygen into the blood and continuously pumps blood around the body. ECMO is used by babies and children with severe heart or lung failure.
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.
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.
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.