In September, my cousin’s little boy had his first birthday. This was an especially important birthday in my family because for a little while, it was uncertain if this beautiful boy would make it.
He was born extremely early, at just 29 weeks old, by emergency C-section due to severe Pre-eclampsia. My cousin was just 23 and this was her first child.
Ever since, despite his early start and accompanying issues, this little man has been incredible. Smashing his milestones out the park closer to his actual age peers than his corrected age peers. (The system works on the basis that his actual age is, for example, 12 months but his corrected age due to his premature birth is actually closer to 9 months.)
The one thing that I’ve learnt from my cousin in this last year, aside from what an amazing person she really is, is how little society actually understands conditions like Pre-eclampsia and how a premature birth can affect a baby developmentally.
There were so many people who wouldn’t understand why they couldn’t visit this tiny baby with no immune system during peak flu season. So many who wouldn’t understand even now how his development will have to be treated differently from his peers for his first few years.
To help raise awareness of Pre-eclampsia and premature birth, I have asked my cousin a couple of questions, I hope you find them an interesting and educational read!
So what is Preeclampsia?
Preeclampsia is a disease that affects pregnant women, it is believed to start at conception and has something to do with the way the placenta forms/develops.
It affects blood flow and oxygen flow to your baby, causes hypertension (high blood pressure, over 140/70) to the mother if left untreated or undiagnosed then liver and kidney failure and seizures (eclampsia and HELLP) the only cure for pre-eclampsia is to deliver the baby.
Doctors can try to control your blood pressure with medication, and buy you as much time as possible, in most cases mothers make it to term (37+ weeks) but ultimately you will be induced/ have a c section before full term (40 weeks)
How did you feel when it first reared its ugly head? What made you go to the doctors?
It was actually just a routine midwife appointment when it was discovered, however, at 26ish weeks I went to the doctors complaining of intense dizzy spells and Breathlessness, the doctor assumed it must be low iron – a fair assumption, so I had blood tests.
These came back fine so my midwife decided to check my bloods to see if there was a problem with the way my body stored iron. No problem again, by this point I was 27-28 weeks. Told to take it easy, eat smaller meals more often. I started to have swelling in my hands and even joked about it on my Facebook, fellow mums joked back about the many joys of entering the third trimester of pregnancy.
I was 28 weeks and due to see my midwife on a Thursday, my mum was pushing me to ring them because she was concerned about how swollen my hands, face and feet were. Unfortunately, my appointment was cancelled and changed to Monday. Come Monday I was really unwell.
I can’t quite put my finger on it, I still didn’t think anything was seriously wrong, but I was swollen all over, I was so dizzy, tired, unbearable heartburn right across the top of my bump, I was just fed up… Figured I was having a rough pregnancy! I nearly didn’t even go to the appointment, but I knew I had too. I got there, had more bloods taken, and then came my routine blood pressure and urine sample check.
I have always had normal blood pressure my whole life, it had crept up in pregnancy which I later remembered my midwife mentioning at some point but that it ‘wasn’t unusual for blood pressure to increase a bit during pregnancy.’ My appointment was at my local birth centre barely 10 minutes from my house, where I planned on having an un-invasive as possible, natural pool birth which I very much looked forward to. I was 29+1, I was in a room with my other half, normal midwife and another midwife, the one midwife took my bloods, then my normal midwife took my blood pressure whilst I sat quietly listening to my other half and the other midwife chat.
I suddenly became aware that my usually very chatty bubbly midwife had gone quiet. She was suddenly serious. She checked it again, and I started to become aware something wasn’t right. She left the room without a word and we sat in silence until she returned, she asked me to go do my urine sample. I thought it was odd that she seemed so off.
In the toilet was a weighing scale, up until 25 weeks I had only gained 9lbs my whole pregnancy, but when I checked my weight at 28 weeks I had gained another half a stone, and now at 29+1 I had gained another 21lbs. How could that be right? I stood there confused for a good minute before I realised I must have looked at the scale wrong last time. I did my urine sample and gave it to my midwife who whisked it away. She wasn’t gone too long before she came back to the room of Silence. She sat down, formerly but calmly and kindly.
‘Josie, love. Your blood pressure is a little high, and your urine protein levels are high, I think you need to be checked over, have you heard of pre-eclampsia?’
I had heard of it, my auntie on my dad’s side had it (Claire: that was my Mum, readers!) I didn’t really know anything about it, though. She commented that I did look very swollen and had seen in my notes that there were comments about me looking puffy, me telling them I had been having headaches that didn’t go, I had also been having pain across the top of my bump which I had been mistaking for heartburn, and having blurry vision and now, rapid weight gain. All signs of pre-eclampsia. She rang our nearest high-risk unit and came back, they wanted to see me at 4pm.
My nearest high-risk unit is an hour and a half away, so I had enough time to go tell My parents (I was going to need the lift, definitely not well enough to drive!) my mum convinced me to go pack a bag just in case I would be kept in overnight. I scoffed, I honestly thought I would get there, we would probably be made to wait hours and then finally get to go home with some medication or something. When I got to mine to pack, I did the thing no one should do… I googled my illness.
From what I could tell just by looking at the NHS website and similar, I had all the symptoms but didn’t fit the usual criteria (typically happens to mothers to be in their 40s, obese, high BMI, maternal history of pre e, history of high blood pressure) from what I could tell if I did have pre-eclampsia it must have been mild, and worst case scenario I may have to be induced anywhere around 37-38 weeks, since going to full term with pre e is dangerous for mother and baby.
I spun this as a good thing to my partner, we will know when the baby is coming now I guess. I kept saying ‘that’s even if I do have it’ I arrived for my check at the hospital, fairly relaxed. Thinking what a fuss this all seemed. Waiting with the other ladies, a nurse came out and asked ‘Are you Miss Price?’ And I was taken straight in and put in a little cubicle, there were other people waiting, I started to get nervous, how serious was this?
She hooked me up to an electronic BP machine, she took it a couple of times, came and checked, turned the screen away from me. She went and I heard her ask for a wheelchair, she came back to me with a tablet and ushered me to take it ‘What is it?’ I asked.
She explained it was a blood pressure medicine called nephidipine, it’s for instantly dropping blood pressure, she explained that mine was very high and this medicine starts working the second it touches my tongue.
Then the wheelchair arrived, it was for me! I was wheeled out where my mum and dad were waiting (Jamie, my partner, was with me) and they told them I was being taken to labour and delivery. Everything there on is a blur, I was hooked up to a drip of hydrazine, wasn’t allowed to eat and only allowed 70ml of water an hour, had a catheter bag to check my input and output and protein levels, and a cannula in my other hand to have blood pressure medicine administered straight into my blood stream all whilst several doctors and nurses whizzed in and out the room. Had my reflexes tested by a consultant and no one really talking to me, just to each other. I was on a lot of medication so the first night is a bit of a blur.
Did you feel like you were in good hands? Did they pick up on it quickly?
Yes, the second I was admitted I was in great care, the doctors and nurses were amazing and I can’t thank them enough not just for the physical side of the care but emotional support too. they listened to any and all of my concerns and I didn’t feel like any question was too silly.
What was going through your head the moment they told you he was coming early?
Eventually, by about 9pm the day I was admitted my consultant told me I had pre-eclampsia, it was quite severe and I was borderline eclampsia (signs of going into seizures). My liver and kidney function weren’t great either. He then told me my baby would be delivered in days at the most. I was hysterical. I was told to calm down but how could I? I had just been told my baby needed to be delivered 11 weeks early.
I spent the night barely sleeping due to my blood pressure being checked every 5 minutes from the electric machine and vomiting from the huge cocktail of drugs, a midwife had to stay with me around the clock so at least I had someone to talk to. By morning things were looking better, I was allowed to eat and drink again, came off the drip and I was able to take my blood pressure medication by mouth, there was new hope to get me to 32 weeks.
Unfortunately, as the days went by the amount of medication I needed was the most I could have, scans showed he was IUGR (below the centiles and had stopped growing) due to the pre e and on the day CTG scans showed very poor fetal traces, my teeny tiny boy was giving up.
He was delivered via emergency c section at 29+6 which his Dad just made it in time too, he had just gotten home from visiting me when he received the call that they needed to deliver right now, it was a huge shock.
We had decided not to find out the sex so to keep me distracted he made jokes about whether it was a boy or girl. It took only 3 minutes to get him out and he was crying! The neonatal team were ready, I only saw a glimpse of him, he looked perfect. He looked bigger than I expected him too. I was taken to recovery and after a few hours was able to be wheeled in to meet our son for 5 minutes, I was so out of it on the medication I don’t remember it but his Daddy took a picture.
How do you remember those first few days? Are there any moments in particular that stand out in your memories?
I didn’t meet Alfie properly until 1pm the next day. I was completely floored, utterly speechless. His legs were as thin as the width of my thumbs, his eyes closed, his face and body covered in masks, wires and tubes, his incubator surrounded by no less than three or four machines all keeping my baby alive. His ears weren’t formed, his skin was thin and translucent, he had long hands and feet, though!
He kicked and flailed every now and then, for the first few days this is what our visits were, me painfully staring at a baby between glass. I was allowed to touch him sometimes so that was something, I would read to him and tell him I was his Mummy, he seemed to recognise my voice.
How long was your NICU stay? How do you feel about that experience and the staff who cared for you?
He was 2lbs and 5oz and came home at 36+4 weighing a still teeny 4lbs 1oz.
A few days before discharge they found at his eye test that he had stage 1 ROP in his right eye, ROP is retinopathy of prematurity, it is very common in preemies born before 32 weeks or less than 3lbs, it is the leading cause of blindness in Childress.
There are 5 stages, Stage 1 and 2 are common, usually resolves on its own but regularly checks by an ophthalmologist are needed, rarely this gets to stage 3 which means the retinas are coming close to detaching and so surgery is needed before this happens, stage 4 means there are partial detachments and 5 means the retina has fully detached.
Unfortunately, 2 weeks later at his next check, it had gotten to stage 3 with Plus disease. Plus disease indicated it was happening rapidly and he had stage 2 in his left eye. He was sent straight to BCH for emergency surgery to save his sight, they decided to do both eyes and thankfully we were only in there two nights.
I cannot thank the NICU staff enough, they literally saved my babies life again and again. They truly are amazing. Whilst in the intensive care bay he would have a nurse who sat by his incubator constantly taking notes (writing down all his stats) from 7am-7pm then a shift switch for the night nurse 7pm-7am. Total one on one care.
I had a favourite nurse in there, on day 5 she was the first one who made us (me and my partner) feel really welcome. She took the time to show and explain to us what all the different machines did and what everything meant, showed us how they tube fed him my expressed milk, (1ml an hour at this stage!) showed us how to do his ‘cares’ and she asked us if we had held him yet, which we hadn’t!
Unfortunately, we weren’t able to that day, or the next, but we had the same nurse the next day and she got him out for us to hold him! Our first cuddles at 1 week old.
Did his preemie birth cause any further complications? What were you told to expect for his future?
Yes, unfortunately despite me having the steroid injections his lungs were still very poor. He had surfactant deficient Lung disease, he did come out crying but went onto a breathing support called CPAP, however, by morning his left lung had collapsed and he was on a ventilator.
His lungs collapsed 3 times total, (twice on his left and once on the right) he has drains and then he did really well, he was off the ventilator by day 6, back onto cpap and on high flow oxygen tubes, by day 11 he was in air, breathing by himself! He had to have the odd trickle of oxygen along the journey but otherwise he did amazing. He completely out did everyone’s expectations.
How did that make you feel and how have things been in the first year compared to what you expected?
It was terrifying, I think I was just in a state of shock for at least the first week or so, I don’t think any of it really hit me until we were home. I learnt patience like I had never known it before, I took each day by day.
When we were first discharged we had 3+ appointments a week, it was pretty intense! Things soon calmed down though and now at 13months old we only have 1 appointment a month, if that! I honestly didn’t know what to expect because I really just focuses on taking everything day by day.
How did the world outside the NICU react to all this? Family and friends? Do you think people had enough understanding of your situation?
We had an overwhelming amount of support, from friends and family. We lived a 100mile round trip from the hospital, the hospital had three ‘flats’ for parents whose babies were being discharged (they refer to this as ‘rooming in’ where you can stay in the flat with your baby on the ward to adjust to their needs and call on a nurse if necessary in their final days before discharge) I wasn’t discharged until day nine after my c section due to blood pressure and after that we would have to return home.
I couldn’t believe I wouldn’t be able to just pop up and see my baby anymore, he was still in intensive care fighting for his life and I had to come home. One of my town councillors found out about our story and helped us loads, there used to be a NICU closer to where we are from and in the move it was promised that parents from Powys (where we are) would be given priority places to stay at the hospital, even if that meant putting us anywhere in the hospital.
We should have been offered a place and we weren’t despite all my efforts of asking around the hospital every day what our options were, it was like no one wanted to tell us staying in one of the flats was actually an option.
Our next visit up to the hospital we were offered the flat during my sons stay it was on a basis that if they needed the room we had to leave, it was awful really every day we didn’t know if we would have to go home and when we would come to see our son we didn’t know if we would be allowed to stay.
I can’t thank Joy Jones (the councillor) who set all this up enough, she was a huge support and help during our sons stay and without that I don’t know how I would have coped. Also, my partner’s mother lived closer to the hospital and welcomed us into her home during his stay, we obviously had to go home sometimes but the fact we could stay with them in between home and the hospital saved us so much unnecessary added stress.
For friends and family, I had my personal Facebook page updated every day with his progress, I would receive so many messages from people every day, it was easier that way and took the pressure off replying to everyone since I was more than happy to share his progress, I loved receiving all the kind messages from people and seeing them cheer on his tiny milestones.
What do you wish people knew about Preeclampsia?
That the symptoms are basically pregnancy symptoms!
There isn’t any way of knowing you have it without going to your midwife appointments where your urine is checked for protein levels and your blood pressure is checked. 1-6% of pregnant women get pre-eclampsia, and of those 1-3% result in early pre term delivery.
It’s seriously life-threatening to the mother and baby and the only cure is delivery. Once you have had pre-eclampsia you’re more at risk of getting it again in subsequent pregnancies, due to how severe my pre e was and how early it resulted in Alfie arriving, along with the fact he was IUGR (although related to the pre-e it causes separate risks in further pregnancies) and the fact that a year later I still suffer from high blood pressure means it’s quite likely I would have another preemie, even if there is another cause.
I have seen midwives to discuss it who have assured me they would do their best to get me to 32 weeks (preemies born before 32 weeks have more risks) and I would be monitored and high risk from the start.
I’m advised that If we wanted another then I should see a doctor before we even start trying to conceive to get care plans in place, So I wish people would also realise it’s not a case of ‘it might not happen next time’ I’m now high risk of getting heart disease and suffering from strokes as a result of how severe the pre-e was too.
Having another baby puts those risks even higher, I have my son to think about now and I suffer with PND and PTSD as a result of what we have been through, we are nowhere near ready of even thinking about having another baby and maybe we never will and that’s totally ok, we are truly blessed to have the one we have.
With the ongoing need to protect him from flu and colds during the winter months even a year later, is there anything you wish people knew or understood better?
Generally, people I know are really understanding about the precautions we are taking for our second winter (his first was right at discharge) but we do get the odd comment and strangers don’t seem to like it when you ask them not to touch your baby!
People also seem to think you should allow a baby to be exposed to germ to ‘build immunity’ that’s all fine and good for a fit and healthy toddler but my son has poor lungs, and a floppy larynx, a simple cold could Easily land him back in hospital on breathing support, no thanks.
The last 3 months of pregnancy are when babies develop immunity from their mother, my son was 2.5months early, he didn’t get that. The only thing that will build his immunity is time. All round It’s not too bad, we mostly just have to avoid large crowded places, so baby groups are off the cards until April. I miss baby group so much!
His first winter it was easy to avoid town/supermarkets/baby groups, but this year it’s not as realistic or practical for us to do, sometimes we need things and he has to come with me. People who are ill/have been ill in the last 48h are not to come over, which really isn’t much to ask anyway, and expected to wash their hands.
Finally, you are an incredibly strong person and excellent mother, you have done amazingly this past year. Is there anything you wish you could say to yourself back there in the NICU on day one?
I would show myself what an amazing loving fun boy he had become, and that everything really was going to be ok.
Thank you so much for such incredible answers, Josie! I really hope this information from a real person’s experience can help others!