This is Lynette & Millie's story of early onset pre-eclampsia and severe prematurity. This inspirational story was shared at our 2023 conference and Lynette and Millie generously share their story here. 

I write this primarily as a previous consumer of your services, but as a colleague as well I want to firstly acknowledge that our story isn’t everyone’s and for many, a diagnosis of pre-eclampsia at 22 weeks might not be possible or easy, because of lack of attendance at antenatal care or other factors, and even if it is, the outcomes are not always like ours. The death of infants delivered at 25 weeks secondary to pre-eclampsia and with significant growth restriction would not be unexpected, nor would significant long term issues. As a therapist in the neonatal and intensive care units, I have been involved with many 25 week infants who have not survived or survived with significant long term medical and developmental issues. I could not be more grateful for the extraordinary care we both received and for the miracle it took for that care to turn into the amazing young woman I have for an 18 year old daughter now.

Our story will be a very familiar one to people working in this field. After a couple of miscarriages, we were delighted to find ourselves with a little one that seemed to stick, however very quickly the pregnancy was not all that straightforward with some bleeding and early symptoms of an irritable uterus possibly related to a subseptate uterus.

I was under the care of a private obstetric service (partly because of previous medical issues) and at a routine appointment at about 22 weeks, my urine dispstick indicated increased protein. Over the next week or so, with increasing surveillance it became clear that medication was not significantly changing the progression of the illness and, with increasingly high blood pressure, I was admitted to hospital at 24 weeks for further management, including steroids, should the baby come soon. I have to say, the compassion with which I was cared for made an enormous difference to this experience.

As someone working in the neonatal unit, I obviously knew this was going to have an outcome I had absolutely wanted to avoid. It was just a matter of how bad it would be.

Once admitted, I had a couple of small placental bleeds in the first few days of my stay but they stopped spontaneously and the baby still seemed happy enough but a more significant abruption a few days later with foetal decelerations, led to an emergency caesarean at 4am on the 3.4.05. I remember being wheeled rapidly with an oxygen mask on. I remember a lot of people arriving - people that we knew - and heart-breakingly, I remember asking them to only do what they thought was appropriate if it looked like she wouldn’t survive. But she did survive at - 660g, ventilated but coping - and we were the proud, and extremely anxious parents of a little girl we had been hoping to meet much, much later!

In the meantime I was not that well. The course of the pre-eclampisa worsened before it improved with deranged LFT’s, continuing high and labile blood pressure and the development of cerebral oedema with headaches, hyperreflexia and clonus.

This was unfortunately complicated by a UTI and early mastitis on top of recovering from the c-section. My husband slept on the floor in my room over this time, worrying about both his girls – a time I have a very foggy memory of. I was discharged after 2 weeks in hospital, a liver scan that showed no damage, resolving LFT’s, improving blood pressure and a very vulnerable baby in NICU. Leaving her when I was discharged was one of the hardest moments in some ways. It feels extremely wrong to go home without your baby.

Millie had a really rocky course for the first couple of months. Two Pulmonary hemorrhages in her first 10 days led to a significant deterioration requiring oscillation and not unexpectedly she developed lung disease and was difficult to wean from respiratory support.

I would spend 12 hours a day at the hospital, doing anything they would let me do to care for her. I didn’t get to hold her for 2 weeks because she was so unstable. I remember this almost visceral urge to climb into the portals of her incubator to be with her. Not practical or even possible but I felt attached to her straight away and the need to be with her was overwhelming. Right from the start, Sim and I were both heavily involved in most aspects of her care. I imagine, because of both our medical backgrounds (Simeon as an aneasthetist and me as a developmental therapist in NICU), we were able to participate in her care in a way that maybe isn’t as easy for some other parents, but we were so grateful to be able to parent her in whatever way I could in this strange phase. My first hold of her at 2 weeks was unspeakably precious. She was so small – her head size of a tennis ball under my hand - tubes snaking back to the ventilator, keeping her wee lungs puffing away. She would spend hours there on my chest from then on and we both slowly recovered.

Millie came home around her due date weighting 2.2 kg. She was fully breast fed which was amazing after the long journey to get there, on oxygen and still had a long way to go but you finally feel like a family at home. And despite how wildly anxious Sim and I were, we were delighted to learn how to do this next phase together. We spent a lot of time quietly at home getting to know her properly but we also had a lot of appointments between us.

I was being followed up for the obvious maternal issues but also given a history of severe migraine with white matter changes, some SVT and now this episode of pre-eclampsia on top of miscarriages, there was a flurry of activity to do some investigations and seek a unifying diagnosis. I was sent to a cardiologist, a rheumatologist, another maternal medicine specialist and back to the neurologist for a range of tests and to try some new medications. In the end there were no definitive answers from all this although some unwanted things like MS, lupus and CADASIL were ruled out and that was a relief.

Another pregnancy still felt incredibly risky and we had received varying advice about whether this seemed sensible. Later support from one of the maternal medicine specialists gave us enough courage, after a number of years, to consider this again, and after one more miscarriage and a highly monitored and treated but essentially unremarkable pregnancy we had Josh. I did develop high blood pressure at 37 weeks and given the history they decided to do a semi-emergency section and deliver him before anything else developed. My blood pressure settled over a period of weeks and I had none of the other complications I had during Millie’s pregnancy.

One of the things we have tried really hard to do is not be defined by what has happened for Millie. Yes, it was a terribly anxious time and it absorbs your whole life for what feels like forever but she was, in so many ways a beautiful, bright, happy, normal little girl and we didn’t want her to feel like she was anything other than that. Because of ongoing medical issues she had overnight sleep studies, bowel biopsies, lung CT’s cardiac echos, lung function tests, many, many blood tests and multiple other investigations of exclusion (like a sweat test to rule out CF) but for all of her risk she had no unscheduled, illness related hospitalisations for which we felt incredibly lucky. Like everyone in this situation we did have a number of scares though.

Our biggest fright with her, was on a flight to Australia when she was probably close to 2 when we discovered she required oxygen to travel. She had been on oxygen at home for 6 months but was well off it by this time. On this flight, she was really unsettled which was unlike her and so I was getting her to sleep in my arms. She eventually dozed off and I suddenly realized her breathing wasn’t right. As she settled into sleep at altitude, she reverted to patterns of periodic breathing like she had done as a neonate with long pauses and intermittent gasping breaths. The problem being that her lack of capacity meant that she wasn’t recovering when she did breathe, and over the course of several minutes was becoming dusky and difficult to rouse. The emergency oxygen obviously solved the issue at the time but when we got back to NZ we went to hospital. She had an xray which showed a middle lobe collapse which she was otherwise completely asymptomatic of. We assumed this may have precipitated the issue but further fitness to fly tests both in the respiratory lab and later on, in real time on a plane with oximetry, showed that she did, in fact, revert to these immature patterns of breathing at altitude but rather than let that stop us travelling, she travelled with oxygen until she was 12 and robust enough to mange without.

These days, Millie would say she doesn’t remember a whole lot of her early childhood experience of the very regular medical appointments and interventions. What she does remember are random little moments like making rubber band balls with the nurses and the doctor making her run up and down the stairs in the hospital to get her heart rate up for a test. Looking back on that time, she would say it felt really normal because as a family, we tried to never made a big deal about the health issues as she was growing up. Millie tells a funny story of being in the car on the way to the hospital for a lung function test and asking me when her little brother was going to have his. So at this point I had to be honest and tell her a little bit about why this was part of her life. The other thing that has had an impact on Millie, in both a positive and challenging way, is the toll all this took on her voice. Due to prolonged and repeated intubation she has vocal nodules and paroxysmal vocal cord dysfunction, as well as damage from chronic reflux which has affected her voice, giving it a lovely husky, quality, but certainly not typical for a teenage girl. It’s something that as a developing singer-songwriter, she has had to learn to accept - sounding different from her peers and not getting into choir because her voice didn’t blend. Rather than being a negative thing, it’s part of who she is and what her experience has left her with. Ultimately, I think its uniqueness is partly what earned her a place in a TV music competition. As Millie said in an interview for this show, learning to embrace her voice rather than dislike it or give up because of it, is a small testament to her resilience over a lot of little (and big) things related to the legacy of her prematurity.

So what would I say in retrospect to a group of people that are deeply interested and profoundly invested in this area of maternal research and care?

I might not have had the space or emotional capacity to say it at the time, but I am so thankful. And I say this on behalf of others too, and the many who are yet to be your patients. The efforts you put into researching prevention, detection and treatment do make a difference. The compassion with which you care for people when the outcome looks grim or actually turns out to be devastating, is not wasted on them. For those of us that despite a rocky start, end up with an outcome like this, we are truly grateful.

Check out Millie Eaton on Spotify