The children of ABAaNA

The ABAaNA study

One the ABAaNA children with their mum

The blog for the next 3 months or so will be coming from Uganda. I have a few months to play with before starting a job in South Africa in August so I have returned to Kampala to take up a job in obstetrics (that’s everything from pregnancy to childbirth for the non-medics). Not only is it a chance to explore this side of healthcare a bit more before physician training, it’s a chance to build up my surgical skills so I can be of more use in South Africa. Whilst I will be working in the maternal high dependency unit 4 days in a week I will be spending one day per week helping out on a large study looking at the long term childhood outcomes of newborn brain injury in Uganda, and I thought this would be a good place to start the blog.

Mulago Hospital is Uganda’s national referral hospital housing about 3000 patients. Not only does it see about 100 deliveries everyday, but it is the destination for the most complex cases of pregnancy. Whilst many of the babies born here leave the same day, many need to stay in the special care unit whilst they recover from complications that occurred during birth. Unfortunately each day there may be two or three neonatal (newborn) deaths and a few more suffering from seizures due to oxygen starvation during birth. The seizures may indicate brain damage which may later manifest as disability in the form of cerebral palsy. Life in the UK with a disability is tough enough, even with all of the equipment and support groups available, but life in Uganda with a disability is something else.

Whilst child mortality in Africa is reducing at record levels, mortality and morbidity of newborns remains static. There are about 200 million children living with disabilities in the world and 80% of these live in low income countries like Uganda. The overwhelming cause is a lack of basic obstetric services meaning women routinely give birth in the home with no-one to help if things go wrong. Giving birth remains a dangerous business; as we evolved to walk on two legs, what the pelvis gained in strength it lost in flexibility; and as we developed more complex social skills a larger skull was required to accommodate an increasingly large brain. As a result a large number of babies get stuck on the way out into the world. The brain is starved of oxygen, and the subsequent brain damage can  manifest itself as long term disability. The long term outcomes of such damage in Africa are not yet know, and the specific risk factors that lead to damage have not been delineated either. I am pleased to now be part of the largest prospective study ever performed in Africa that is addressing these unknowns, the ABAaNA study (Associations of Birth Asphyxia and infection amongst Newborns in Africa). The results of this study will be used to help target interventions and get newborn health, and the related disability in survivors, onto the healthcare agenda.

About the study

Ellie and Julius with one of our children

Ellie and Julius with one of our children

600 babies were recruited into the study 2 and 1/2 years ago (200 suffered trauma during birth and 400 were normal deliveries.) The children are now toddlers and it’s time to assess how they are developing to determine the longer term outcomes. Conducting this form of assessment on a two year old is no easy task. We will be using the Griffith’s neurodevelopmental test which is a series of games and puzzles that address different developmental modalities – speech and language, movement, practical reasoning, hand-eye co-ordination, and social skills – all easier said than done. When assessing a child of this age it’s on their terms, and the name of the game is improvisation. The operator must be both calm and opportune, skills which a paediatrician develops over a lifelong career. Up to this point my interaction with two year olds has been based on the following formula – get them as excited as you can, as quickly as possible, encourage them to do ridiculous things, and then leave them with somebody else when they become over-excited and begin to cry. I was going to have a lot to learn.

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We would start the proceedings with two weeks of intensive training. To the credit of the study we were to be trained by two of the best; Prof Frances Cowen is Professor of perinatal neurology at Imperial College London and joining her was Miriam Biarge, consultant paediatrician at the same institution. We thank them for giving up their time for free. It was to be a fascinating two weeks and an honour to be taught so closely by world authorities on the subject. Not only did they impart a huge amount of technical knowledge, their instruction in dealing with children of this age was second to none. The way an experienced paediatrician interacts with a child is a beautiful thing. The child appears in charge and the paediatricain must play a series of roles to suit the ever changing situation and sometimes volatile mood of the toddler. Through subtle tricks of body language and voice the paediatrician may lead the child down certain avenues, all the while keeping up the impression that the child has arrived there of their own volition. In this game blatant force is useless, subtle coercion is the order of the day. The learning curve was steep indeed, and often demoralising as another child’s attention was lost and the game was up for another hour. The process can take 5 hours in all accounting for approximately three tantrums, two pairs of wet trousers, a sleep and some lunch. By the end of the two weeks, whilst we were still feeling the pressure, we were ready to go it alone. I saw my first child in clinic yesterday (now a few weeks ago..) and, despite an early trouser wetting incident (on the toddlers part..), all went to plan. Bricks were piled on top of each other, choochoo trains were made to go under bridges, and the horse was correctly identified as a goat. The Griffith’s test was made in the UK so a few aberrations due to cultural reasons are allowed.

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Other than learning about the technicalities of newborn brain damage, and the intricacies of performing neurodevelopmental assessments, working on a study like this can teach you a lot. Following children for this amount of time in an environment like Uganda is an extremely difficult challenge; mothers move away, phone numbers change, and families don’t see the value of bringing a child that seems well. One would expect a large loss to follow up in such a study. The study’s strength in this regard falls to the work of two remarkable ladies, both called Margaret, a senior midwife and a senior paediatric nurse in their earlier careers. Their ongoing relationships with the mothers is what keeps them turning up for evaluation. The Margarets are able to relate to these women in ways that we can never imagine, not just in terms of the language but in terms of what it means to be a mother in a city like Kampala. Working with locals like the two Margarets is the key to conducting successful research in Africa. They may not be giving professorial presentations at international meetings but they remain absolutely integral to the success of the study. These are things that are only learnt with experience in the field.

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Despite the clear value of this study it’s still been difficult for the team to acquire funding. Whilst there is enough money to conduct the research, it hasn’t always been easy to raise additional funds to provide the families with something that will make a real difference to their lives. It only seems right that whilst these families contribute to the global scientific literature we give something back to them to help with the daily struggles that they have. Today we launch a campaign to make some money so that we can offer the families some basic equipment, support and education. For example we are now getting customised chairs built to help the families in the home, and a support group to teach the mothers about cerebral palsy. A child born with disabilities in the UK is eligible for services to the value of many thousands of pounds, and rightly so, but a child born with disabilities in Uganda is often afforded nothing. If you can help us out with a bit of cash to help out the families it would be much appreciated. No gimmicks, no skydives (maybe a triathlon in a crater lake on the border with DRC in a few weeks), just a simple request for help on their behalf. See the JustGiving page for more:

www.justgiving.com/CerebralPalsyUganda

 

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