Parents’ experiences of neonatal surgery

Transferring the care of mother and baby to a specialist hospital

The need for transfers to specialist hospitals will all depend on both the baby’s condition and the type of hospital care locally available. Babies who require surgery will often need to be transferred to a hospital that has a specialist neonatal and paediatric surgical team and facilities. While many hospitals have neonatal intensive care units (NICUs)*, not all have staff with the necessary skills to perform complex surgery on babies with rare conditions. 

Michelle and Harry live in London, and it turned out that the specialist neonatal surgical team was based at their local hospital, just a few minutes away.
But most parents were not so well placed. In practice, parents often see their baby transferred to large specialist hospitals in their closest major city. This can be a long way from home and involve long journeys to visit their baby, or staying in a hotel or hospital accommodation for long periods. Donna and Matt’s baby was born in their local maternity hospital, but he became unwell shortly after birth. He was later diagnosed with Hirschsprung’s disease* and they were told he would need to be transferred. “His x-ray shows a blockage, it’s not something we can deal with here, so we’re transferring you…it was about half five in the morning when the ambulance turned up to take him away”

Transfer of care during pregnancy

Some parents were alerted during pregnancy that their baby would need to be transferred to another hospital to receive specialist care after birth. Claire and Hayley both had sons diagnosed antenatally with exomphalos* and were told the care for their baby would be at a specialist hospital in their respective local city. Zoe lives in Scotland. Her local maternity hospital is just 20 miles away, but once her daughter was diagnosed with gastroschisis*, she was sent for scans at the specialist hospital where her daughter would be cared for after she was born. It was a 3 hour drive away. 

Some mothers continued to have their antenatal care at the local hospital (e.g. Ally and her baby diagnosed with gastroschisis) while the planning for their baby’s care after birth was at the specialist hospital. This meant a lot of travel during pregnancy for scans in different places. Having their antenatal care split across different hospitals caused confusion and stress in some cases. Amy E found it very stressful having the responsibility for coordinating the communication between her local hospital and the specialist centre.
Transferring the baby after birth

The babies in this study who could not be cared for locally often needed to be transferred quickly after birth. This was either because they had conditions that had been diagnosed antenatally (such as exomphalos or gastroschisis*) or because once born their conditions became apparent (such as Hirschsprung’s or Congenital Diaphragmatic Hernia*). Whether they had been prepared for their baby’s transfer or not, parents found this separation stressful and distressing.
Some parents had a longer wait with their baby, as staff searched for a hospital with an available bed and arranged the transport equipment. Rebekah had her baby in her local hospital, and it took several hours for the incubator and ambulance to be arranged to take her to the specialist centre.

So it takes quite a long time for them to transfer them you have to go on this special ambulance so she wasn’t, once she started doing this vomiting to when she left was probably about four, four hours maybe, like they have to prepare them to go on a special incubator thing and so yes she was transferred straight up to, to [city name] and I’d had a caesarean so I couldn’t really go anywhere or do anything.” Rebekah

The hospital was often a long way away. At one point, Alix and Antonio were told that their son might need transferring to Scotland from their hospital in the south of England for specialist treatment. They started planning travel and hotels, but he improved overnight, so it was not necessary to make the journey. Nicky’s son was born prematurely and developed NEC*. As he was prepared for transfer they started to prepare for what would be a long haul as their baby recovered with the specialist care he needed.
Mothers left behind

Babies were often rushed away after birth for the intensive care they needed. But this meant their mothers were often left behind for several hours or days as they recovered physically from birth. Caesarean deliveries often compounded their difficulties. Donna and Rebekah had both had a caesarean so couldn’t follow their baby immediately. Donna discharged herself and was cross the ambulance wouldn’t take her with the baby. 

So then it was about half five, about half five in the morning when an ambulance turned up to take him away I, we couldn’t go with him I wasn’t allowed with him cos I’d had a caesarean so if something had happened to me in the ambulance on route they can’t deal with two patients”. Donna

*Footnote definitions: 

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.

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 (pooing) normally.

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.

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

 

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