PART 1
PRETERM BIRTH RATES ARE RISING
Did you know that more than one in ten babies around the world are born preterm (before 37 weeks)?
A 2012 study[1] by the World Health Organisation (WHO) determined that 10.6% of all live births globally are preterm. That’s about 15 million babies, of whom about 1 million die due to complications. Many who survive go on to have a range of disabilities and problems.
Whilst the majority of preterm births and deaths occur in lower income countries, at the time of the study data showed that preterm birth rates were increasing globally. A 2019 study[2] from the USA confirms that rates continue to increase there and in the UK there has been no decline in rates over the last 10 years[3]. In the USA, the leading cause of newborn death is prematurity.
So why are there so many preterm births? According to the March of Dimes[4] (who were involved in the WHO study), the degree and quality of medical care plays an important role. In developing countries a lack of healthcare resources and infrastructure increases the risks. In developed countries, the WHO report suggests that possible reasons might be increases in maternal age, underlying maternal health problems (such as high blood pressure and diabetes), increased use of fertility treatments that lead to multiple births, and more caesarean (or “C-”) sections being conducted before term (topics that I hope to cover in future).
For public health systems, it is clear that much needs to be done to raise awareness of how to prevent premature birth, how to better prepare women for it and to improve support for families.
The casual reader may find these statistics interesting, though possibly not very alarming. It is not until it happens to you that you realise how critical these calls to action might be.
WHY I CARE: OUR BABY WAS THE “ONE IN TEN“
My daughter, Lily, was born very early (27 weeks). Her birth was both terrifying and devastating – for her, for me, and for my husband, Sean. There was no warning, we were completely unprepared, and it shattered our hearts, our world and our dreams.
We are now 18 months down the line. Whilst our world is very different, our hearts have mended more or less – we have a beautiful little girl and our dreams for her are boundless.
We have also had time to learn and develop perspective.
I must honestly say, having come through Lily’s birth, and having read quite widely on the topic of prematurity, I do not think there is sufficient general awareness of it or what happens in a neonatal intensive care unit (NICU). I also don’t think there is always enough support given to parents while their babies are in the NICU (see below for why).
MY OWN INFORMAL RESEARCH BACKS UP MY IMPRESSIONS
Every premature birth is traumatic and disorientating for parents. I wanted to establish whether the lack of support we felt was more widespread, or simply our bad luck as expats in a system that is often inaccessible to non-locals due to language and cultural barriers.
I spoke to a local friend in Hong Kong who was on bedrest at 30 weeks. At that stage she was told that she might have to deliver preterm and her baby would then go to the NICU. However, there was no discussion about prematurity in her antenatal classes held at 24 weeks. Friends of hers had a preemie in a public hospital (like we did) but were only able to visit on certain days and then only one parent at a time. They found it very hard.
I also did a (very informal and unscientific) little survey amongst friends in the UK, South Africa and the USA. The results (see Figure 1) suggested we were certainly not alone in our lack of awareness before the event. However, on balance we probably had a more challenging experience compared to friends in other countries once Lily was born.
I must acknowledge that all of the friends I informally surveyed had access to good medical facilities in mostly higher income countries. My perspective in this article is therefore oriented towards experiences of prematurity in the developed world. As referenced above, however, it is clear that so much more needs to be done at a structural level in developing countries address health in pregnancy, prevent prematurity and provide better hospital resources to care for early babies.
WHY I BELIEVE PROSPECTIVE PARENTS SHOULD KNOW ABOUT ALL BIRTH EVENTUALITIES
Whilst I would absolutely not advocate creating unnecessary anxiety for pregnant women and their partners, I do think that some education about what happens when a baby comes early, and what a NICU is, can empower prospective parents.
In first world health systems, where the infrastructure is in place to prevent premature birth, pregnancy complications are usually identified and addressed early in pregnancy (e.g. gestational diabetes or preeclampsia ). Unfortunately, however, sometimes it happens for no apparent reason, which was the case when our baby was born.
When it does happen you are very likely to be confronted with life-altering decisions for your tiny baby whilst you yourselves are in a state of extreme mental (and often physical) vulnerability. I feel, albeit from the safety of hindsight, that knowing a little bit more would have removed some of the foreignness of the environment and given us some context for where to start and who to turn to.
WHY I BELIEVE PARENTS NEED STRONGER SUPPORT IN THE NICU
One. The trauma hits you out of nowhere and never goes away
Mothers and fathers of NICU babies often describe themselves (as much as their babies) as “NICU survivors”. Because believe you me, whether you are in the NICU for one week or many months, it requires the fortitude of a soldier to get through it. It is scarring for both parents; many end up with PTSD, depression, anxiety, or even just aching pangs of grief that hit you at the least expected moments, months and even years after.
Being a parent to a preemie in the NICU is an assault.
Often the first time you see your baby is in an isolette, intubated, tied up to many lines, with eye patches on and a blue light shining on them for jaundice. I will never forget the first time I saw Lily and how my heart broke into a thousand pieces. She looked like a little mouse. It was unfathomable that this desperate creature was my longed for tiny girl.
The NICU is a cacophony of beeping medical equipment. Nurses are constantly mulling about tending to their little charges. Parents speak to each other in hushed tones with downcast eyes.
You are confronted with a range of medical terminology and terrifying-sounding infections. We knew that Lily had bleeding on the brain and brain injuries. We were warned that she also faced the risk of necrotising enterocolitis, retinopathy of prematurity, and pneumonia to name a few. I went straight on to Google but found it quite intimidating. Instead I found a much better resource, a book about preemies, which I downloaded on to the Kindle app on my phone so I could easily reference things.
As you sit by your baby’s side, or with her on your chest for skin-to-skin kangaroo care, you learn about episodes of apnea (a pause in breathing) and bradycardia (a slow heart rate) when alarms start beeping and how to rub your little ones feet to wake them up again.
NICU parents are often required to make life-critical decisions in an instant.
Some NICU parents take home a perfectly healthy little baby. Some parents tragically have to deal with death in the NICU. Others take home beautiful babies with a lifetime of challenges ahead of them.
Two. Often you have to make life-altering decisions for your baby
Making potentially life-altering decisions for your baby can be nearly impossible. Medical advice is not always clear cut. Often doctors err on the side of caution or are hesitant to make an early prognosis because the outcomes for different children can be so varied. In more litigious societies, doctors don’t speak out for fear of legal recrimination.
So then who do you turn to for guidance and support? Family and friends play a role. We have been so blessed by the strength we have drawn from ours. At the same time though, in the early days they were also grieving, and I think we sometimes felt more stressed because they couldn’t fully understand the intensity and rollercoaster of emotions that we were going through. Most NICUs provide social worker or psychologist services to help manage the risk of parental post natal depression, anxiety and post traumatic stress disorder.
Personally, I think the best option is to be able to speak to other families who have been through similar situations.
Resources do exist in some countries to support families. I have come across incredible organisations such as the March of Dimes, Hand to Hold and Graham’s Foundation in the USA, and Bliss and Tommy’s in the UK.
In our case though, we felt very exposed and quite alone. Whilst I know every effort was made to try to support us in the NICU, often cultural barriers (real or perceived) on both sides made communication very challenging in the earliest days. There were no other English speaking parents in our NICU. None of the medical fraternity we consulted outside the hospital connected us with parents groups at any other hospitals.
In the end we had to navigate it on our own. We spoke to as many medical doctors as we could (even a family referral in the USA) to get second opinions. We agreed a weekly meeting with the NICU team to discuss all our concerns and Lily’s progress. I also came to rely on my preemie book, and found Hand to Hold a very encouraging parents’ guide.
A FINAL POINT
It is important to say that whilst we felt unsupported, it was through no fault of our NICU staff. The level of medical care Lily received can only be described as world class. The nurses were exceptional and I know they tried very hard within the resources at their disposal to help us. Toward the end of Lily’s stay, a special arrangement was made for me to speak to a former NICU parent who could speak English. I found that one session very therapeutic, it was a pity it was not possible to have had the conversation much earlier. It is my impression that much more needs to be done in Hong Kong. I am not alone in this – in 2017, a group of mothers established support groups for local Cantonese-speaking families because they felt they needed more support in hospital.
COMING UP NEXT – PART 2 – HOW AWARENESS AND SUPPORT COULD BE IMPROVED
It is one thing to bemoan the status quo, another to try to propose potential improvements. See Part 2 for my observations about things that could be done to improve awareness and support.
[1] Born to Soon: The Global Action Report on Preterm Birth, https://www.who.int/pmnch/knowledge/publications/preterm_birth_report/en/
[2] March of Dimes Report Card 2019, https://www.marchofdimes.org/mission/reportcard.aspx
[3] www.tommys.org.uk
[4] www.marchofdimes.org/mission/the-global-problem-of-premature-birth.aspx
