Case study: A tale of two 27-week babies
Dr Lee Collier presents two case histories of babies assisted by Lia’s Wings charity and discusses the best approach when premature babies are born out of country
Baby Alice
Mrs T was on holiday in France when she experienced premature rupture of membranes, and concern about the baby’s wellbeing prompted a caesarean section. She gave birth to Baby Alice at 27+3 weeks’ gestation with a birth weight of 830g. Alice was given artificial surfactant to treat respiratory distress syndrome and required non-invasive ventilation for 36 days, followed by a further nine days of nasal continuous positive airway pressure (CPAP) and then high-flow humidified oxygen therapy. Alice required treatment for two episodes of presumed sepsis and antiviral therapy for secondary cytomegalovirus (CMV) infection.
Lia’s Wings charity was contacted by Mrs T when Alice was 51 days old to request assistance in arranging transfer back to the UK. Mrs T was getting good support from her insurer, but she felt that the treating doctor and insurer were waiting for Alice to be ready for discharge home, and Mrs T was concerned that this could take a very long time. We advised that Alice met the definition for chronic lung disease (CLD; also known as bronchopulmonary dysplasia or BPD), was at risk of a prolonged hospital stay, and would require follow-up with a specialist pediatrician. We contacted Mrs T’s insurer and gained agreement for Lia’s Wings to make arrangements for repatriation. We contacted a consultant neonatologist in the UK and arranged hospital admission, and Mrs T’s insurer agreed to fund the transfer. There was some delay while Alice was treated for an infection, and further delay waiting for bed availability. We repatriated Alice by air ambulance at 77 days old.
Alice’s lung disease resolved and she was discharged home. At a consultant follow-up clinic she was found to have a distended abdomen, and an ultrasound scan showed lesions on her liver, which were initially thought to be cancerous. Alice was transferred to Great Ormond Street Hospital (GOSH) in London for specialist investigation. The liver disease was attributed to reactivation of the CMV infection and she continues to receive treatment from GOSH and her local pediatrician.
Mrs T credits the inpatient repatriation with expediting the liver diagnosis: “Were we not flown back to a UK hospital, we wouldn’t have a pediatric consultant caring for us; we would instead have a GP looking after us, and I truly believe this would have been missed.”
Were we not flown back to a UK hospital, we wouldn’t have a pediatric consultant caring for us
Mrs T reflected on the effect that the delayed repatriation had on her mental health: “The delay in getting back to the UK changed me as a person; I had never felt so alone and so paranoid in my life. The longer we were there, the further I felt from my family. It was heavy, especially the separation from my elder son. We missed each other like never before… There was me – overthinking – will my child ever forgive me for not being there for him while he was also worried about his baby sister? The insurance agents kept telling me Alice is too small to travel and she’s safe… because there’s no medical emergency for her to be transferred, we must wait.”
Baby Jack
Mrs B was on holiday in Turkey when she went into premature labor and delivered Baby Jack at 27+5 weeks’ gestation with an estimated birth weight of 1kg. Jack required intubation and ventilation, and had a pulmonary hemorrhage on the first day of life. He was extubated on day 12 and received non-invasive ventilation for a further seven days followed by nasal CPAP then high-flow humidified oxygen. He was treated with antibiotics for two episodes of suspected sepsis. Cranial ultrasound scans suggested significant changes and possibly evolving hydrocephalus.
There was no suitable insurance, so the family were self-funding hospital treatment in Turkey
Lia’s Wings was contacted by a friend of the family to request help with transfer back to the UK. There was no suitable insurance, so the family were self-funding hospital treatment in Turkey. Lia’s Wings was able to offer partial funding for repatriation and support to arrange a crowdfunding campaign for the remainder. We contacted a consultant neonatologist at a suitable UK hospital and obtained agreement for admission. There was some delay in obtaining emergency travel documents, and Jack was repatriated by air ambulance on day 30 of life. Although he was on minimal oxygen therapy, the flight team found him to be extremely sensitive to any stimulus, and he required escalation to non-invasive (bilevel positive airway pressure or BiPAP) ventilation for the transfer.
In the UK, further brain imaging showed obstructive hydrocephalus, and Jack underwent neurosurgery to site a ventriculoperitoneal (VP) shunt. He spent a further 104 days in hospital before discharge home.
Discussion
Parents left abroad may be separated from their partner, other children and wider support network. Even where neonatal and surgical care is broadly equivalent, developmental and family-centered care varies enormously from country to country
We have presented the cases of two preterm babies of similar gestation with similar intensive care needs. Early advice from the charity enabled Jack to be promptly repatriated whereas Alice spent more than twice as many days out of country and was close to being ready for discharge home at the time of her transfer. Both babies developed complications requiring long-term specialist care. For Baby Jack, had the transport been left to a later date, progression of his hydrocephalus would have caused him to become more unstable and potentially left the parents with the terrible choice between a far riskier repatriation flight or to stay and face unaffordable hospital bills. Although delayed, Baby Alice illustrates the advantage of an inpatient repatriation for preterm babies leading to consultant pediatrician follow-up, which in her case enabled prompt identification of a problem and rapid referral to specialist care. At home, the symptoms may have progressed much further, and within the UK system GP referrals may take many weeks to progress to specialist review.
Parents left abroad may be separated from their partner, other children and wider support network. Even where neonatal and surgical care is broadly equivalent, developmental and family-centered care varies enormously from country to country. A key part of neonatal care is gradual handover of responsibility from the hospital team to the parents or carers who will be taking baby home. Language and cultural differences are a huge barrier to this process despite the best intentions of all concerned. For the UK in particular, family integrated care (FICare) is standard practice, with parents closely involved from day one, even for babies requiring intensive care.
Babies born prematurely are unique in the expectation that after many weeks of intensive care, they may recover and walk out of hospital (in a parent’s arms). It is therefore understandable for risk assessments to be biased towards a ‘wait and see’ approach. Insurers and parents alike will be naturally risk averse, and treating doctors who lack flight expertise will be reluctant to sign a ‘fit to fly’ declaration. However, the risk of complications makes this approach something of a gamble, and the consequences of missing a window of opportunity for a transfer home can be devastating for the family and also present a significant cost burden for the insurer. Furthermore, in the UK, and perhaps elsewhere, it is difficult to arrange expert follow-up for babies who are not repatriated into the hospital system.
The stories of Alice and Jack illustrate why we, as a charity, strongly advocate that the default approach to premature babies should be air ambulance repatriation to a hospital neonatal unit in their home country as soon as safely possible. We recommend early involvement of a neonatologist with transport expertise to communicate with both the treating doctor and the family to advise on the best time for repatriation, with the flight carried out by a neonatal intensive care team.
Permission was obtained from both families to share names, medical information and photographs.