Women who experience high-risk pregnancies are too often forgotten when their babies are born

Summary

In this long-read article, Abbie Mason-Woods talks about her experience of having a high-risk pregnancy, pre-term birth and two baby girls in a Neonatal Intensive Care Unit (NICU).

Abbie shares her deep insights as a patient and parent, highlighting the importance of trauma-informed, person-centred care throughout the care pathway, and the risk in forgetting the mother. 

Content

I’m Abbie Mason-Woods and in late 2021/2022, I experienced a high-risk pregnancy with my identical twin girls. The girls were born at only 27 weeks plus 5 days gestation, weighing in at just 677g and 500g, and spent 20 weeks in a Neonatal Intensive Care Unit (NICU).

On paper, I had my career as a Designated Safeguarding Lead and qualified Family Worker in Education, a First-Class degree in Childhood Studies, and a confidence to always advocate for the right support, at the right time for families. However, the cloak of vulnerability that fell upon me when I found myself pregnant with twins and navigating a high-risk pregnancy, pre-term birth and twenty weeks in NICU, was beyond paralysing.

Beginning to process and reflect

Clarity.

The journey to bringing home my pre-term twins had in fact started long before I walked through the NICU doors for the very first time, as their mother. I realised I had once been the patient too. A ‘high risk’ pregnant woman who had been told at 22 weeks pregnant that it was very possible my pregnancy could end in stillbirth because of its complications and difficulties. Weeks followed of careful considerations about options and expectant management of the pregnancy, the tertiary care miles from our local hospital, multiple scans, and too many bloods and blood pressure checks to count.

Pre-eclampsia led to pre-term birth and early delivery at 27 weeks with an emergency caesarean section, a blood transfusion, a week’s stay in hospital, and my babies now separated and in two different hospitals. Only one remaining in the same hospital as myself. Quite the list of events.

And then I was discharged.

From patient to ‘NICU mum’

I took up watch now at the side of my girls’ incubators instead. It was all I could do as a ‘NICU Mum’. Watch on as between them they endured extended periods of mechanical ventilation, emergency and planned surgeries, including lifesaving surgery for a bowel perforation, a stoma reversal, laser eye surgery for retinopathy of prematurity (ROP), blood and platelet transfusions, episodes of sepsis and many other clinical events. They now were the high-risk patient, and I was simply the patients’ mother. Helpless as they fought for their lives.

I’d never ‘mothered’ before. As a first-time Mum, I wasn’t acutely aware at this time of how different all of our ‘firsts’ were in those first few months, but I did feel like I had been mis-sold ‘motherhood’ somewhat. I hadn’t had a term baby, who had been placed immediately upon my chest, no car seat photo as we all left the hospital together within a few days, no family being able to rally round us in a ‘baby bubble’, as we soaked up newborn snuggles. NICU was my third and my fourth trimester. It certainly didn’t feature in a leaflet in an antenatal clinic. I spent many hours hoping they would live and eventually come home.

Photo shows Abbie holding one of the girls in NICU. 

Forgotten but needing support

Disconnect.

I noticed that I had existed in two very different clinical systems and played two very different roles. Once I had been the patient and then I became the person giving consent for the patient to receive care and treatment. Maternity and neonatal existed in isolation from each other. Maybe partly due to my babies being in a NICU that wasn’t at the hospital I gave birth in, or maybe each thinking the other would ‘catch’ us, there was a striking realisation that there was no connectedness between the two.

I was in a transitional state. I wasn’t ready to be discharged and become ‘just’ the parent. It became clear to me that the overwhelming feeling of paralysis as I stepped through NICU with the girls for twenty weeks was because the cortisol rushing through my body had long run out. The fight or flight mode I was in was exhausting and the lethargy I felt entirely overwhelming. My body trying to repair after major surgery and a complicated pregnancy, whilst travelling miles to my babies, expressing breast milk, remembering to eat and drink, and watch on as they fought for their lives. Navigating the twists and turns of NICU with very small neonates, the future was entirely unknown.

Each hour unpredictable, it all cumulatively took its toll. Whilst my mind was often still trying to process the clinical decisions that I needed to make at just 22 weeks pregnant, my body stood next to my baby being mechanically ventilated and requiring 1:1 nursing.

So, was this abandonment intentional?

No. Each clinician, from the tertiary Hospital I gave birth in to the NICU did their absolute very best to ensure I gave birth safely and our girls made it home. Nobody intended to ‘forget’ about me; however, systemically, I had been forgotten. Complicated paths such as this can lead to cumulative trauma and to mitigate this support must be built in at each stage of the pathway.

Supporting women who spend their post-partum period in NICU

Safety netting for high-risk pregnant women, through birth and beyond must be robust and rigorous. These are life changing moments for parents, carried with us forever. Without considerate and informed care and support, patient safety can be compromised both physically, mentally and emotionally.

The specific needs of women whose post-partum period is spent in the NICU must be considered. For example, care for the physical aftereffects of birth, such as checking stitches or blood pressure, often means having to walk back into a maternity unit surrounded by pregnant women and women who are able to take their baby home immediately. This can be incredibly painful emotionally which could prevent some women going back. They may also not wish to leave their baby while they receive aftercare.

My GP surgery at home had no understanding of what was happening in the Level 3 Surgical NICU unit my daughters were in. Despite receiving my discharge paperwork from the hospital I gave birth in, when they called to arrange our ‘6 week check-up’, a receptionist advised me that if the babies were home it would be with a GP. They repeatedly asked me when the babies were going to be discharged. When I said I didn’t know, trying to swallow the lump in my throat, the receptionist had to ask a colleague and told me that if there were no babies to check it would be a healthcare assistant ‘to check your stitches.’ Thus, demonstrating the lack of connectedness and understanding between the settings and assuming each post-partum woman fitted into a one-size-fits-all care plan.

Cumulative trauma builds at a significant moment in our lives and diagnoses of an array of maternal mental health conditions, such as postpartum depression or post-traumatic stress disorder, may follow. It is important to consider not only the experiences parents and caregivers have with their own baby, but also vicarious trauma, from the other events you witness and experience during time spent on NICU. Parents who have experienced time on a NICU Unit are 50% more likely to experience psychological distress, than parents who haven’t.

The care provided should ensure that protective steps of support are in place universally to minimise the effects of this.

Embedding protective factors

Universal but tailored support

I don’t think there can be an ‘ideal’ as such. Each situation and circumstance is different. We as individuals differ too, notably my husband’s experience of NICU and his feelings differ greatly to mine. Care is required to be personalised, trauma informed and intuitive. There are multiple contact opportunities with high-risk pregnant women owing to care and appointments being more frequent. These should provide support, signpost to appropriate information and, ultimately, ‘catch’ the patient.

I think it is important that we acknowledge that support should be universal here, not just for those who may have been identified as ‘vulnerable’ because of a particular factor, such as a previous mental health condition. Universally providing support means that the patient feels empowered with knowledge. There is also great comfort in knowing that clinicians recognise that medical events or experiences can be challenging physically and/or mentally, and that there is support for you if you need it. Without this, patient experience is minimised, and clinicians can appear de-sensitised. The patient can be left feeling that they should be coping and that this is the shared expectation.

Photo shows Abbie's husband's hand on one the babies while in an incubator in NICU. 

Kind and compassionate communication

For parents who experience NICU there is a continued need for offers of support throughout their child’s stay. Kind and compassionate language, care that is sensitive to a family’s needs and pathway to the ‘here and now’, opportunities to ask questions or gain a deeper understanding of what your child needs or is experiencing, collaboration and involvement in your child’s care, and decision-making opportunities. All examples of protective factors that can be implemented and that also offer the parents some control back within an uncontrollable situation. A shared understanding between clinicians and families of the feelings associated with spending a third and/or fourth trimester in a NICU is important too. Fear, helplessness and guilt are some of the ‘normal’ feelings associated with experiencing a NICU stay. There is definitely a feeling of safety knowing what you are experiencing is ‘normal’ for the situation you are in.

Primary post-partum care

Beyond hospital care, primary care has its role to play too. Navigating trauma and its after-effects does not always happen immediately and this needs to be recognised. Trauma-informed care throughout all settings means that appropriate support can be provided at a time that is right for the individual; it is never too late to be given the choice to receive support. This will demonstrate that the experience is not simply compartmentalised within each setting but that the pathway is connected throughout. This pathway should also include robust follow up for post-partum physical care.

Using patient insight for change

I think that too often, patients can feel that if they provide feedback and reflection on what they wished for, or needed but didn’t receive, during their care, it may lessen the gratitude towards clinicians. It doesn’t. Our insight can shape care for the better, making it more efficient and safer. Patients should be telling their story just once and the pathway actively listening, responding to patient choice, working collaboratively and intuitively based upon individual needs and wishes. This will empower patients and their families. Universal, unconditional, trauma-informed care and connectedness provides universal safety.  

Photo shows Abbie Mason-Woods