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Working together to protect the well-being of preterm babies and their families

An interview with Kate Marsh, a Midwifery Manager at Tommy’s on Word Prematurity Day



Today, the 17th of November, is World Prematurity Day. The day was initiated in 2008 by the European Foundation for the Care of Newborn Infants (EFCNI), to raise awareness of preterm birth and the associated challenges. Then, organisations in Africa, the USA and Australia joined as well and made Prematurity Day an intercontinental movement. Currently, organisations from more than 100 countries come together to commit to improving preterm birth for babies and their families.


Birth is considered preterm when a baby is born before 37 weeks gestation. Preterm birth is the biggest cause of death in newborn babies and the chances of survival and the risk of developmental problems depend on the gestational age at birth. Usually the earlier the birth, the higher the risk of problems.


The small pair of purple socks, framed by nine bigger socks, has become the symbol of Word Prematurity Day. This symbolises that 1 in 10 babies is born preterm. The purple colour represents sensitivity and exceptionality.


1 in 10 babies worldwide, and 53.000 babies in the UK alone, are born preterm every year. These are very big numbers, suggesting that we should take this issue seriously, raise awareness and promote the well-being of both babies and families.


I have been interested in understanding the experience of preterm birth for both babies and parents since I was at University. I worked on a research project and I used to go to the Neonatal Intensive Care Unit (NICU) of a hospital in Milan, to see babies, speak with parents to try and understand what they were going through.


I remember it to be a very emotional experience and I am really happy today to have had the opportunity to speak with Kate Marsh, a Midwifery Manager working with families of preterm babies for Tommy’s. Tommy’s is the largest UK charity researching pregnancy complications, miscarriage, stillbirth and premature birth.



 


The are many known risk factors, but sometimes reasons why preterm birth occurs are unknown. Therefore, I started by asking Kate what the main factors that increase the chances of preterm birth are.


I would split them into two sections - she said: the pregnancy factors and the more social-lifestyle factors”.


The pregnancy factors include a previous premature birth or late miscarriage, or a medical condition associated with the current pregnancy (for example pre-eclampsia, gestational diabetes, low PAPP-A levels – a hormone detected within the placenta), the presence of too much or too little amniotic fluid or a baby genetic developmental condition. A pregnancy with more than one baby can also increase the risk: “The more babies you have in your pregnancy, the more likely they are to come earlier”.


Lifestyle factors include smoking, the use of alcohol, drugs and certain medications, and being overweight.


However, these are only risk factors, there is no causal association. Indeed, sometimes preterm birth might happen and none of those things were at play during pregnancy. You can do everything as textbook and you still have a premature birth, it happens, and it is not anyone’s fault”.


I asked Kate which pieces of advice could be given to women and birthing people to reduce the chances of preterm birth, when possible.


“If you are planning a pregnancy, it is worth looking at lifestyle factors even before you start trying for the pregnancy and seeing whether there is anything you can do to increase the chance of having a healthy pregnancy, such as taking folic acid”.


“Then, the main thing is booking your antenatal appointments as soon as you know you are pregnant and attending your appointments and making sure you are getting the support you need. It is also about knowing when is important to seek help- so being aware of the red flags symptoms- as things may happen out of the blue (e.g., bleeding, increase in blood pressure, water loss, pain).”


Research has shown that mental illness and stress can increase the risk of pregnancy and birth complications, including preterm birth. This suggests that it would be useful to add these questions to the initial assessment in pregnancy. Considering my role as a psychologist and a researcher in perinatal psychiatry, I asked Kate about the importance of mental health. Kate highlights the importance for women with mental illnesses to be followed throughout their pregnancies so they can get the right support both antenatally and once their baby is born.


While it is important to avoid “getting stressed about the fact that you feel stressed” and rather focus on receiving the right support, it is also important for women to know that if they suffer from, or have a history of mental illness, or if they are going through a particularly stressful time, this may put them at risk of preterm birth.


Kate agrees and highlights how important it is for women with mental illnesses to “go back to the basics of eating properly, exercising self-care, talking to friends and family.. as these are impactful things”.


This is very true: self-care is important for all women during the perinatal period. As I have said before, taking care of you means taking care of your baby too.


We then talked about the type of support currently available for women and families at risk of preterm birth and for those who experience preterm birth.


Kate explained that women and birthing people will discuss their risk factors and at what gestation the baby could be born with their midwife. “Often you will be offered a tour of the NICU to see what to expect, because sometimes it can be quite overwhelming and emotive. Being there with a potentially small, early, poorly baby, it is a lot of emotion”. Women and birthing people will usually be able to have a chat with the neonatologist and the paediatricians and there is often also a psychologist or psychiatrist.

There is also an App developed by Tommy’s (My Prem Baby App), which gives information about preterm birth as “it can be overwhelming loads of information to remember”. The App also allows you to keep track of your journey (e.g., tracking feedings and weight, recording the baby’s special moments and milestones), make your notes as this can help processing what is happening and get support for your mental health.


Of course, anyone at risk of preterm birth will be monitored throughout pregnancy and might have extra scans and support. Then, if preterm birth happens, families continue to be supported by health professionals in the Unit.


We know that preterm birth can be very stressful or even traumatic. Women may need to have an emergency c-section, require admission to intensive care or longer stay in the hospital. The experience of the NICU, with the associated separation from the baby, can also be emotionally devastating. Women and birthing people can feel guilty, have difficulties accepting what happened, and are faced with the potentially uncertain baby’s health. Indeed, parents of pre-term infants often experience higher levels of depressive, anxiety and post-traumatic stress symptoms compared with parents of full-term babies and these often remain higher through childhood and adolescence.


Kate highlighted that, while there is lots of support available at the beginning, long-term support is currently lacking. “It may be that the baby is well, they are developing and they are fine, but the impact of having a premature baby or a small baby or poorly baby, being in a NICU, that stays with you and is often missed”


The experience often remains un-processed over time, even when the baby is fine:If you have a small baby, quite often you worry about their growth for a long time after any professionals stop worrying about it, it can be a couple of years of worrying about, if that baby is growing, developing, how that experience affected them”.


“Seeing those babies in the NICU, seeing your baby, it’s not what most people imagine having a baby is like, so you are grieving for that normality and that loss of what you expected that initial period to have been like, and that really shouldn’t be underestimated”.


Preterm birth has a strong emotional impact on parents and this may be aggravated by the fact that every family has their own background. “For example, it may be on the backdrop of having a long fertility journey, multiple losses, it may be someone new to the country, who doesn’t speak the language, and so lacks also that local support network”.


It would be important to give parents more long-term support to help them process the experience, particularly if they are thinking of having another pregnancy. Parents may still be processing what happened two years ago, they may feel guilty that it was their fault.


Although formal long-term support for parents going through preterm birth is not currently available in the UK, midwives at Tommy’s are available for support, even when the child is older. So if you feel you are struggling, that’s a place you can contact for help.


As much as premature birth is stressful for parents, the same is true for babies. As well as the risks for the baby’s physical health, we know that premature birth can also have an impact on the baby’s emotional well-being. Children born preterm, particularly if very preterm (<32 weeks), are more vulnerable to mental health difficulties, particularly emotional and behavioural disorders, in childhood and adolescence. The negative outcomes that can be observed are similar to those described following adversity in childhood, which are ascribed to the experience of “toxic stress”. This is defined as “the absence of the buffering protection of adult support”. Parent-infant separation is indeed an important risk factor for the baby’s well-being. This is why, nowadays in most hospitals, parents are encouraged to spend as much time as possible with their baby to avoid the negative consequences of parent-infant separation.


I therefore asked Kate what support is currently available to protect the mother-infant relationship and the children’s long-term well-being.


Kate explained that it is very important that parents spend time with their babies as much as possible, have skin-to-skin contact (also known as Kangaroo care), unless the baby is not well enough to do it, and are involved in care (e.g., sanitizing bottles, feeding, nappy changes, comforting the baby). These are all very important things to help build parent-infant bonding in the early time period. Clinicians will be there to support parents in this process.


We previously said that the relationship with the baby is not necessarily immediate, but rather a building process. This is even more so for parents of preterm babies. “They may be very traumatized, they might feel they are not bonding with their baby, and they may not feel that love and emotion straight away. It is having the reassurance that that’s OK, take tiny steps, be involved with your baby’s care, build confidence in supporting your baby”.


Therefore, in most hospitals, parents can stay overnight, so they can be close to their babies, establish feeding and avoid parent-infant separation. If the mother is not well enough to get to the NICU, the birth partner can start going. When the mother can go, clinicians will make sure that she is well looked after, e.g., has food, pain relief, she is in a comfortable position.


It is important that parents get the support they need, also because we know that their mental health can impact their child’s mental health as well”.


Then, once babies leave the hospital, they usually aren’t referred for special psychological services just because they are born preterm. The care is rather tailored for each family. Each baby is followed up by a paediatrician for a period of up to two years, to check if they are developing well. Together with the paediatrician, either the health visitor, the midwife or the neonatal nurse will monitor the baby and will work with the family and decide case-by-case the support they may need, so which care pathway is appropriate for them. This depends on the baby’s age, how well they are and how the parents are coping. “It’s really important to individualize the care, to work with the family, empower that family and make sure that family has the support they need”.




The experience of preterm birth is indeed an important under-recognized issue and we should act to protect these families and these children in the long term, to make sure that their psychological well-being is also well looked after.


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