Baby Loss Awareness Week & Technology

Today is the last day of 2021's Baby Loss Awareness Week and I wanted to use this post to take a slight detour away from the remit of the blog - although, perhaps not entirely. In 2010, we lost our second child to a birth defect, a couple of days after she was born. During the pregnancy and subsequent neonatal period, however, we benefitted from some extraordinary support and technology.

Congenital Diaphragmatic Hernia

CDH is a birth anomaly that is present in around 1 in 2,500 births. It occurs when the diaphragm, the muscle that separates our abdominal organs from our chest, fails to close within the first 10 weeks of pregnancy. Organs such as the stomach, intestines and liver can migrate upwards into the chest, meaning lung growth can be restricted and the heart can be pushed to the side. The blood vessels serving the lungs can develop to be quite rigid (stenosis), resulting in a condition called pulmonary hypertension, once the baby has been born. Typically, identified during the 20-week anomaly scan, CDH is typically associated with a 50/50 survival rate and remains one of the most complicated neonatal diseases to treat. During the pregnancy, however, we were most fortunate to benefit from fortnightly ultrasound scans, under the care of the fetal medicine unit. These were carried out to measure her growth and to understand where her organs were. We were also afforded a 4D scan that allowed us to see her face before she was born, to see her when she was free of life support machines and she was relatively healthy. Whilst such frequent monitoring was taxing, it all afforded us the opportunity to bond with our baby before she was born.

Comparison of babies with and without congenital diaphragmatic hernia (CSOR)

When the big day arrived, she let out a fairly substantial cry and she was quickly greeted by a team of neonatologists who, with great care, sedated and intubated her, before whisking her off to intensive care. Whilst she received around the clock care on a ventilator, much discussion was continuing between some of the UK's best special care baby units, including Great Ormond Street, about how she should be best treated. She received oxygen via a ventilator and, when that was not working so well, she was placed on an oscillator, which provides very frequent but gentle puffs of air into the baby's lungs. The intention in those early days is to stabilise a CDH baby so that the diaphragm can be surgically repaired. Depending on how large the hole is, this is sometimes done using a Gore-Tex patch or, in some cases, simply sewing up the gap. Depending on the baby's situation, this might be within a few days or it can be months.

ECMO

In our case, things weren't improving and so it was then decided that she would need ECMO, which stands for Extracorporeal Membrane Oxygenation. ECMO is essentially a heart and lung bypass machine, which does the job of oxygenating the blood and pumping it around the body. This gives the heart and lungs space to rest and recover. ECMO isn't an option for every baby and it is typically the very sickest babies who will be candidates. ECMO requires very specialised staff and has been used as a life-saving treatment option for some of the sickest COVID-19 patients. At the time, there were only seven neonatal/paediatric ECMO beds in the UK. One was made available to her in Glasgow... but we were in Cardiff.

Extracoporeal Membrane Oxygenation (ECMO) Source: Rafat and Schaible

Three Planes and a Baby

This would mean that she would have needed to have been transported by air, and so a Sea King helicopter was sent from Scotland to land at Cardiff Airport (the hospital helipad could only take lighter helicopters), where she would be taken by ambulance on the road. CDH babies are fragile, however, and movement can be dangerous, causing them to become very sick and desaturate easily. Consequently, the RAF then sent a Hercules aircraft to an air force base near Cardiff. As a winged aircraft, it was decided that this would be more stable for her than a helicopter flight. Sadly, she was still too sick to take that flight due to the risks associated with the road transfer. In an act of extraordinary kindness, Sweden sent a Lear Jet with a team of medics and a mobile ECMO unit, earning her the, perhaps inevitable, nickname of 'Dancing Queen' on the ward. The intention was to place her on the mobile ECMO in Cardiff and then transfer her to the airport so that she could be flown to Scotland. Sadly, she died of a heart attack, brought on by her pulmonary hypertension, just as the Swedish team arrived on the ward.

Equitable Access to Support

Losing a child is, obviously, incredibly painful, but, in the last five months of pregnancy and during her two days on the neonatal ward we benefited from extraordinary medical staff and their life-saving technology, the support of the RAF and even Sweden. Without that, we would not have been given the time that we had and, in the end, we lost our daughter reconciled with the fact that everything that could have been done, was tried. Yet, millions of people, all over the world, lose children due to inequitable access to healthcare. Infant mortality rates are improving in some places but there is still much work to be done. According to the World Health Organisation, in 2018, the risk of a child dying before the age of one year was over seven times higher in some parts of Africa (WHO African Region) than in Europe (WHO European Region). As a mother, I cannot begin to imagine how difficult it is to lose a child for want of an affordable treatment that just wasn't accessible.

As technologists, we have the capacity to help. This might be through the design, development and even repurposing of technological solutions. In some parts of the world, mHealth solutions, for instance, might be able to provide relatively affordable and accessible support to those working in maternal and pregnancy health. Better connectivity can help ensure that communication and sharing of best practices between medics can help mothers and babies, regardless of where they live, access the best solutions. I am enormously proud of some of the research and ingenuity that is demonstrated by both staff and students in the field of technology and health, particularly within my own institution.

Baby Loss Awareness Week 2021, as we emerge from a pandemic having benefitted from fast access to life-saving COVID-19 vaccines, is a reminder of how important access to good quality healthcare is for everyone. The stats from the WHO speak for themselves. We really are not safe until we are all safe.

Sources:

CSOR, (2021) Congenital Diaphragmatic Hernia, Available at: https://www.npeu.ox.ac.uk/csor/conditions/congenital-diaphragmatic-hernia

Rafat, N., Schaible, T. (2021) Extracorporeal Membrane Oxygenation in Congenital Diaphragmatic Hernia, Frontiers in Pediatrics, Available at: https://www.frontiersin.org/articles/10.3389/fped.2019.00336/full

World Health Organisation (2018) Infant Mortality, Available at: https://www.who.int/data/gho/data/themes/topics/indicator-groups/indicator-group-details/GHO/infant-mortality