Tag Archives: Baby loss

pre-eclampsia

World Pre-Eclampsia Day – Our Story.

Today is World Pre-eclampsia Day.

Seven Years ago 22nd May 2012 was going to be our section date. It was the date that was going to be the final chance of our baby’s birth. It had been agreed months before that I could have had a VBA2C (Vaginal Birth after 2 C-sections). 22nd May was going to be her eviction date.

Instead, we met her and said goodbye long before this day.

Pre-Eclampsia Our Story

February 7th – 23+1 weeks pregnant. I wasn’t feeling particularly well. I had a headache which wasn’t disappearing with paracetamol. And my vision was somewhat blurry too. I had pre-eclampsia in my first pregnancy, so I was fully aware of symptoms. I just was surprised it would be so early. I booked myself in to see my midwife who took my blood pressure, tested my urine and took some blood.

My blood pressure wasn’t worryingly high – when I had my eldest daughter both top and bottom numbers were in their hundreds before I was taken for an emergency C-section.

My urine was showing protein.

Although my bloods returned clear from pre-eclampsia, I was showing signs of Anaemia. It was a relief, as I remembered how poorly I had felt in my first pregnancy.

24+1 – Valentine’s Day.

It was our first Valentine’s Day as husband and wife, we were looking forward to spending the evening together (in between all the HG vomiting). We were also set to receive our wedding album too.

It was whilst sitting in a café whilst doing some rare day-out shopping, that my hands began to swell at an alarming rate. I could watch in slow motion how they were doubling in size, to the point of my skin cracking.

Swelling was one of my main symptoms in my first pregnancy, but was never as bad as what I was experiencing at that moment in time. To be on the safe side, I thought I would book in with the midwife.

“You Must Be An Exception.”

I arrived at my extra appointment, to a different midwife. On first impressions, wasn’t the best. I already felt like maybe I should just wait to see my own midwife at a later date. I explained my symptoms, and how I had symptoms just a week before, she stated I shouldn’t have been tested for PET, as I wasn’t 28 weeks pregnant.

I explained that I wanted some reassurance, that I had, had pre-eclampsia during my first pregnancy.

“You do NOT get pre-eclampsia before 28 weeks, you are only just 24. It is extremely rare to get it before 28 weeks!” She made me feel like, I shouldn’t be there. I told her I had brought a sample of urine, where she reluctantly dipped it and found I had 2+ protein in it. On finding this she finally took my BP, that was slightly high – but that was hardly surprising. Upon seeing the results, she snapped “Oh well, YOU must be an exception! You’re still far too early.” I felt so guilty.

She phoned over to the hospital, who advised me to go over there to be checked. She was asked to check my baby’s heartbeat. I went onto the bed, she asked me if I knew the gender. I said “no”. Her reply was “It sounds like a girl.”

I was glad the appointment ended. We headed over to the hospital.

Not the best way to spend our first marital Valentine’s together.

Although rare, it was found after blood tests, regular blood pressure checks and urine dips; it was found I had early on-set Pre-eclampsia.

I remained in hospital for two days.

19th February – 25+6

I had to go to the hospital every other day for blood pressure checks, and to test my urine. It was becoming my second home. I was allowed home once again, but by the evening I was having regular contractions, so returned to hospital, baby was a lot quieter than normal. Something wasn’t right. I was placed on to the CTG machine to monitor the heart beat and my contractions, as well as her movements. While her movemenets picked up, and the contractions had eased I was kept in over night for observations.

February 20th 26 weeks.

I completed another 24 hour urine collection, there was a significant increased of protein, blood pressure was still raised. Pre-Eclampsia was here to stay.

I was given a growth and doppler scan, it was then the sonographer kindly asked if I knew the sex, and he then asked if I wanted to know. We found out our baby was going to be our daughter.

I was allowed home that day, but had to continue attending the ward every couple of days.

February 23rd – 26+3

I was originally told to make sure I set aside half a day, for monitoring and test results. However when I arrived a HCA said it would take just an hour or so.

Blood was sent to the lab, and I had my BP and urine checked regularly whilst I waited. And then…

A team came towards me, closed the curtains behind them, and began to tell me, that my results weren’t stabilising, they were worsening each time. There would be a possibility of having the baby in as little as 28 weeks. But they were hoping to get me to 32 weeks. I was admitted there and then until delivery.

I was heartbroken at the thought of being torn between being home with my family and staying safe. It was a horrible feeling.

I was given steroid injections – two at 24 hour intervals, to help develop our daughter’s lungs.

February 24th 26+ 4

I had my second lot of steroid injections, all my observations were raising. Nothing seemed to be getting better.

I was told at the Doctor’s rounds that 28 weeks would be the maximum limit, not 32 weeks.

I blamed myself, I was terrified of what was fgoing to happen, whether everything would be okay. Most of all I missed my family.

February 25th 26+5

We had a visit to the special care unit, the intensive care side. I had experience there, with my first baby. But knew that this was going to be very different.

We were told to expect our new baby to be on the ventilator for at least 10 days, she wouldn’t make a sound on birth. The visit made us feel like an inch nbig, everything looked so frightnening.

We returned to to ward, scared of how things were going to go. Whether or not we would ever get to meet her. Would she die even before birth? WE wanted her to be born after 28 weeks, we wanted to get further than their expectations.

However the baby became less and less active. The midwives thought it best to place me onto the CTG monitor, her heart beat was lovely, but she was tiring. I was on the monitor for two hours. The midwives on the shift did their best to reassure me.

My husband was making preparation to go home for the night, when I began to feel strange in my head, and having stomach pains. which weren’t contractions. My husband reported my symptoms, and bloods were taken. They returned and weren’t great. It was then suggested that I would be transferred to the labour ward for one-to-one care. My husband was offered to stay the night. I knew there was some real concern, as partners staying wasn’t an option normally. Overnight, I was on the CTG machine, and was given regular blood pressure monitoring – hourly.

I really wasn’t well.

February 26th 26+6 weeks.

My husband was sent to have breakfast, whilst I waited for the doctors’s rounds.

My consultant came around, and suggested that I should be Nil by mouth. But would NOT be delivering my baby until I had read the Deathly Hallows – I was reading book 4. He didn’t seem to feel that delivery was going to be soon.

He wanted me to have more blood taken, and I was then allowed back on the normal ward, I no longer needed one-to-one care.

I returned to the ward, with some relief that things were going to be okay. An hour later, I was still nil by mouth, so I asked a nurse to check if I could have some toast.

HELLP Syndrome

Witihn three minutes she arrived at my bed, instead of being tol I was going to eat, I was told that I was going to be having a baby instead.

People with pieces of paper, some with no expression, while others you could see their eyes were filled with concern.

Everything was happening so fast; everyone was friendly and explained that baby would be delivered on that day. I was terrified.

The consultant who had spoken to me just that morning, walked by my bed, explained that my liver and kidney functions were not good, and he wasn’t happy with my blood pressure either. He stated that he was off to book a cot in the NICU, and that he would see me in theatre.

I remember I began to shake, my pyjamas switched to a gown, my eyebrow piercing removed. I was asked if I could leave my rings by my bed. Try not to be scared.

My husband was escorted to get some of his own scrubs, he disappeared. It felt like forever until her returned to me. They rushed me do theatre, where they began to prepare me for the c-section.

Her birth

They took a very long time to place to epidural into my back, the shock began to be obvious. I was shaking, I felt freezing but hot at the same time. I didn’t feel well.

As I looked down, I caught sight of the catheter they had inserted, my urine was a mahogany colour. I knew that was not a good sign.

I was assisted to lie down on to the bed, it was then the room became a sea of blue, more and more people came and spoke to me. Rubbing my shoulder, trying to reassure me and my husband. It was terrifying. There was no more space to put anyone else in the room – of course, apart from the tiny baby who was a bout to be born.

They placed the CTG machine onto my belly one last time, I couldn’t remember that last time I had felt her move. A heartbeat could be heard.

A midwife came and sat by my head and tried to offer us reassurance. I begged her to tell me that the baby was okay and breathing.

“Please don’t let her be sleeping, don’t let her be sleeping.” I begged.

Then there was a noise – tiny but wonderful.

“Your baby is not born sleeping.” She said.

“No, definitely alive she kicked me on the way out.” The second doctor added.

Our tiny premature baby had arrived.

After about 5 minutes, the paediatrician brought this tiny towel swaddled baby over to us, so we could see her tiny face. I didn’t know if that was going to be the last time, I saw her alive. They took her away in the incubator.

It turned out that I was just minutes from seizing.

Melody Caitlyn’s birth story born at 13:36 weighing 670g just 23 cm long. 100% pure feistiness.

February 26th, 2012 – April 1st, 2012.   

melody caitlyn

hyperemesis gravardium

Hyperemesis and Pregnancy Guilt

Parenting After Loss

Hyperemesis Gravardium is a condition in pregnancy which brings severe sickness and nausea. It is not to be confused with morning sickness. It is not the same.

I learned about HG when I was pregnant with my eldest daughter and was repeatedly told that the level of sickness was a sign for a healthy baby. It was, I was able to take her and nearly three years later, her brother.

I then became pregnant with another baby, our first with my now new husband. I felt incredibly sick and was sick a few times during the days between a positive test and the day I lost the baby. Being sick from then didn’t mean a healthy pregnancy.

I had another miscarriage between that one and when I fell pregnant with Melody, no signs of HG with that lost baby.

Melody, the sickness began slow and steady. It didn’t seem to be as intense, until I had a minor car crash; not sure whether it was coincidental or whether the HG was just slow to settle in, but it arrived with force.

There were days where I couldn’t sit up for long, because it made me giddy; I was only able to tolerate a small number of food and drink. The toilet became my best friend, it was all very isolating. I shut out the world, because I don’t like people hearing me being sick, so it was easier to stay at home.

The further I got the more I was sick, this had to be a good sign. No more worry of miscarriage, all this sickness would be worth it in the end…

I had bleeding on and off due to being sick, dehydration caused irritable uterus and Braxton hicks, but I knew that once I had hit the magic 24 weeks, all the sickness would be worth having a beautiful baby at the end.

Then she was born at 26+6 due to me having HELLP syndrome, I was very poorly it was the safer option for us both for her to be born.

The hyperemesis cleared up almost straight after birth.

Sadly, she died at five weeks old. The once distant memories of the hyperemesis came flooding back. Questions, Did the vomiting affect her?

Was I eating enough of the right food?

Did I eat too much of the wrong food?

She was the only one I ate peanut butter with, did that hurt her?

Of course, her death didn’t have anything to do with the hyperemesis.

Pregnancy After Loss

Was the most challenging thing I had ever experienced, outside burying our daughter. The pregnancy after her, I was so anxious that the hyperemesis remained bad throughout her whole pregnancy. I had no idea if any of the sickness would be worth it. I had weekly scans, the travel there was difficult due to being nauseas, sometimes that felt worse than the actual sickness!

She was born and the sickness went, we got to take our little girl home.

Now, the baby after her – our final baby.

The hyperemesis was so severe from the beginning, I had a job to move an inch. It was initially thought of a molar pregnancy because my symptoms were so severe.

I ended up with many types of medication including clexane just so I could keep a sip of water down.

The anxiety, which was difficult to work through, I had hospital stays very late at night, but the smell and the sound made me feel sick, flashback of our daughter’s life and death. It was the first year I couldn’t visit the grave on Melody’s birthday due to being so poorly.

The fear that the medications would hurt or kill our unborn daughter was so overwhelming. I felt guilty for hating the HG, for hating being pregnant. I wished everyday for the pregnancy for have moved on quickly for it to be over. I felt so guilty because I was terrified my wishing would also kill her or leave us with a child that would die in our arms.

I just wanted our baby to be here safe and well.

36+6, and days where I would be sick up to 60 times a day, and our daughter was born. She came home.

Hyperemesis triggered so much within my grief state. Knowing the medications, I was on were strong antiemetics, terrified me. But not taking them also terrified me. My whole body was low in nutrients, and I lost weight rather than gained.

Today, on Hyperemesis Awareness Day I need you to know that HG is not morning sickness, and not all babies come home from it.

Hyperemesis can lead to trauma-based anxieties. For me certain smells and being sick and seeing vomit sends me into a panic.

It took me a while to bond with our youngest, and that brought a lot of guilt; but safe to say I am so lucky that she got to come home. fffffffff

awol

Absent Without Leave

Absent without official leave. Without intent to desert.

Are you with me?

When we have a tight knit group, a close family unit it’s called living in a bubble. People look and see how we all live our lives, sometimes we close off this bubble to anyone new; sometimes things happen in our lives and these bubbles burst, only for them to heal and be tighter than ever. Happy lives, so perfect, so wonderful.

I have bubbles. I like bubbles. Floating free, I don’t see them exploding into nothing, they explode with excitement. They give joy.

Are you with me?

From January to May (or thereabouts), I live in a bubble. But rather than be transparent, happy joyful bubble. It is filled with fog, thick “late at night” fog. I can’t see through it, I can’t concentrate through it. You could almost say it is suffocating, a fight to breathe, a fight to stay afloat without tears, outbursts or moments of being a villain. Not the hero that everybody expects you to be after you lose a baby. “The brave warrior”.

While I suffocate in this thick grief fog, the fog isn’t seen by all; most people can only see the transparent bubble; because that is what most people like to see. Light airy bubbles, not dirty polluted ones.

I’m suffocating in grief.

Are you with me?

In the first 5 months of the year, while I battle trying to brave, for myself, for my family; my friends sometimes – without realising I can seem like the worst person. I probably am.
I really, really don’t mean to be. I am sorry.

I am sorry.

It is hard to put things like this in to words, because explaining the feelings throughout these months are just not easy to comprehend. Unless you can physically feel the effect the death of our daughter has on my brain, unless you can feel the pain which spears through my body; thinking about the what if, maybes and should have been.

I probably should not still be feeling this raw, earth shattering pain seven years down the line. I am not, I have learned to live, to cope with this. I work though it the best way I know how.

Even that I can’t quite explain.

I push people away, I shouldn’t.

When she was alive and then died people – family, friends were cruel; selfishly I protect myself without realising I shut myself off from people who are being kind.

Are you with me?

Loving someone like me probably isn’t easy. Loving me for who I am, but also for what I bring – I am not a normal parent, I am a bereaved parent.

I am still grieving.

These months make me bloody miserable, no matter how hard I try to put on a brave face. No matter how many shits and giggles I have in the back of my mind, I think of “this time in 2012…” Believe me I have tried so hard to not do this.

January, we had the perfect birth plan, I was going to attempt labour and have a vba2c.

February I almost died, and our micro premature baby was born.

March, we had her whole life.

April Sepsis Killed her. I still can’t fathom what went wrong.

May was her due date, it was the month she was going to go home.

Leaving the hospital with PTSD, the idea of replacement children and trust issues.

I don’t have many memories of her, although I am told that I won’t forget. I know I will forget something. I concentrate so hard on being normal, keeping her memory alive without offending people who don’t want to hear about the dead baby.

But this is my normal, “I’m not crazy¸ my reality is different from yours.” C.S.Lewis.

Are YOU with me?

I’m not out to spin a load of excuses, to gain sympathy or pities.

I just need to explain, that I am bloody hard work. I didn’t ask for any of this shit, not one bit of it.

I want family, a village of friends, to be fucking happy. I hate having a dead child too, I can’t change this.

I just need you to understand that I really am not a bitch, I am shy, I am scared – I really am not miserable.

All I ever wanted was to learn to be happy, to laugh again, whether it is through these months or for the rest of the year.

I am sorry for ever being a shit friend,

misunderstood family member,

who wants happy days in the sun.

Are YOU with me?

Please don’t give up, not yet.

Don’t let me go, no matter how hard this gets.

We can be brilliant together.

But sometimes, just sometimes I am AWOL

Absent without leave.

This is me.

baby loss

More Than Statistics

Statistics hit right where it hurts, sometimes facts, numbers figures are heard better than the stories behind them.

But while we concentrate and fascinate ourselves with numbers – maybe even obsess with them. It is forgotten that there are real life people behind them.

For the first couple of years I searched high and low for a statistic of where I would fit in; where our story fitted in; this has led to countless of thoughts of did any of my losses matter?

Five miscarriages, how can I be 1 in 4, when I have watched five positive pregnancy tests return to negative. Heartbeat for my first baby as a young Mum, stop because the sonographer hadn’t turned the monitor around – when just one week before a heartbeat flickered on the screen. In that instant, as I went from a naïve young mum-to-be, I became a number.

Repeatedly told that these things just happen, that it probably wouldn’t happen again, because the numbers tell us so. You’ve had healthy children the odds of baby loss are less now – you know you can do it.

So, when our baby died at five weeks old, after being told she had an 80% chance of survival when she was born rising to 100% when she was given a discharge date. All we heard was numbers, high numbers of odds, of how great these micro premature babies do out of the womb.

Some numbers aren’t as easily recognisable, as others. Not all figures include all losses. The 1 in 4 mostly misses out the babies who live and die.

Our daughter isn’t a number, I don’t trust the statistics. Babies, the children the lives which are cut short are more than numbers and odds which are for or against their tiny lives.

1 in 4 seems like an avoidable number, accept when it is not, accept when miscarriages go unreported, because they were too soon to be registered for booking. My last miscarriage in early 2018 was merely down to one of those things – “go home and rest, your body has done this before”.”you didn’t want another baby anyway.” (I was sterilised four years ago)

Statistics are important but lets not forget the names behind the numbers.

I am not 1 in 4, I am not a number. Our daughter is more than a statistic. She is a person who died. Please remember that.

birthday in grief

Then She Was Seven

Today is the day my life changed.

Today is the day I have learnt to celebrate a child’s birthday without the child.

This is something, I still cannot get my brain around. I had a baby on this day, I had emergency surgery on this day, my body knows that I had a baby, but my brain can’t seem to adjust that the baby who was meant to live a full and healthy life died.

I have a seven-year-old, but she didn’t grow she didn’t leave the hospital. She is forever 5 weeks, but I still should have had a seven-year-old. How can anyone get used to that?

Time has stopped, raced forward and slowed down all at once.

As we entered this year, it has felt different, I have felt pissed at the whole situation, pissed that I am not the person I was before, pissed at my self for feeling like I hate my daughter. Pissed that no matter what I do, I will always be a mother to a dead child. It felt like I woke up after seven years and everything is different.

I can ignore her, ignore the situation, I could stop talking about her; but none of it would change the outcome. I would still be a mum to a dead child.

When I decided to walk away from her, from everything about her to turn and run as far away as I could, I hate being a bereaved mum and I feel trapped.

I wished that I had never met her.

This year I felt beaten by the whole thought that this is our life. I was fully expecting to be ‘better’. This is something I am now learning to deal with.

I was reminded that no matter what I do she will always be our daughter. So rather than run or hate her I need to find a sense of being happy within the situation which has been given – I certainly didn’t choose any of this. I want to make sense of her death; this year I have been given the confidence to push the support group I set up three years ago, it is bloody hard work – but rather than hating her for making us bereaved parents, blaming her for ruining our lives; I am going to learn to love her again, to build a legacy for her and her siblings because they are a massive part of the service we are building and trying to achieve.

I really have had such a tug of war (love) between the life I had imagined and the life we have, I am grateful to the life we have, but I also would have preferred not to have a lifetime of pain – as would many other families who have lost their child. T

I don’t quite know how it is seven years.

This year she would have been doing her year two SATS tests, it is another moment where there will be a number missing in the statistics, a missing child at the table, but there will be no absence reported.

The tooth fairy will never visit her,

I will never have her first tooth stashed away not knowing what on earth I am going to do with it.

She will never need a magic kiss for the knee she grazed running too far ahead.

Or chose a story to read in bed

I will never know the thing she would have liked, or the hobbies she would have chosen.

Would she have been a majorette like the rest of her siblings or wanted to do something completely different.

There will always be a seven-year-old shaped hole an unoccupied space, but in the secrecy that nobody will ever notice that empty chair, or missing friend from the classroom.

Or a hand that isn’t being held

And still the biggest thing that I wish I had known is the colour of her eyes.

I hate not knowing such an important part of someone’s facial feature.

I have a seven-year-old, I would love to have gotten to know her.

baby loss

I’m Sorry, But My Heart Hurts Too.

This was first featured on Still Standing Magazine.

“I have five children; but I parent four. One of my children died.”

I can see the look that changes your face in an instant, you don’t realise you’re doing it. But I can see it, the twist of pain; the looks of discomfort as you’re unsure of how I am going to take this conversation.

You tell me you’re honoured about hearing of her, our little girl who didn’t make it, but in the same breath you tell me that is hurts your heart; and you often don’t know what to say. That by me telling you makes me instantly a different person. You look at me in a completely different way, your eyes look heavy I can hear that deep breath you thought was silent, because you fear that maybe I will share too much or maybe even infect you somehow.

Then I find myself saying sorry. Sorry for upsetting you, sorry for mentioning her, sorry for not keeping her a secret; sorry for having a daughter who died.

I’m sorry.

“I don’t understand these people who keep talking about IT, who feel the need to share their losses, why don’t they just get on with it- I did.” I remain quiet, because I fear that I am different, for not being over it as quickly as the next person; I question am I even coping the way I am meant to?

Am I ill for talking about HER? Should I be moved on? How am I supposed to just forget her?

I’m sorry for bringing her up again. I’m sorry for grieving too long. I’m sorry I am not grieving the right way. I am sorry for talking about my daughter who died.

I’m sorry.

I watch as the children move from one year to another, school holidays, new uniforms, new school year. Another year where we are minus one; another year of never knowing who she could have been. No friends, no clubs, no teams. No school reports.

I’m sorry that I am glad my living children are growing up and that I don’t want them to stop growing. I’m sorry that just sometimes I feel sad that one of our children isn’t moving up.

I am sorry.

As I hear time and time again the wonderful work the health care professionals do to provide care. I am sorry that not all are the same. I am sorry it feels me with a deep and heavy sadness when places get praise. I just wish our baby could have been one of them too. I wish her heart hadn’t stopped. I wish everything was different. I wish I could have done more to save her.

I could have left her in the past.

I could have felt the shame of having a baby who died.

I could have given up.

I’m sorry my daughter died.

My heart hurts too…

baby loss

On This Day

I’ve reached the stage of heavy, few days to go until her birthday.
I re-enter the days as if it were yesterday.
I know many people will wonder why I still struggle all these years on, or why I still speak about her, about where we’ve come from.
About her.
Because I love her.
Because she is my daughter. She may not have been here for long but she was ours. It is hard to miss someone, who we barely got to know. But I do miss her. Of course I miss who she would have become.

I cannot imagine never being able to speak about any of my children, their school day, their activities, their loves, their hates…..so to not speak about Melody, for me is just not an option. I don’t talk about her as often as I did in the beginning, more because I worry about everyone else. But because there are still times where it hurts like hell. I’m in a place where I can enjoy life, but this of course doesn’t mean I am over her, or time has healed me…I’ve just learned to live with what has been dealt to me.

I love social media, I love the “On This Day” Function, reminds me of so many wonderful things we have done as a family. But then it hits me with memories of our girl.

Today for instance..

Another trip to the ward for monitoring, I was hoping I would be in and out in no time! I’d been advised that I would need to allow half a day for the appointment, however when I arrived the HCA said that it wouldn’t take that long and would only be more like an hour. So I text mother who had given me a lift to say I wouldn’t be long and could she turn back round.
I sat waited while my BP, urine and bloods were done. When a doctor came and stood in front of me to tell me there would be a possibility of delivery in two weeks!!!
TWO WEEKS????? WHAT THE HELL!!
A lovely midwife walks in where I burst into tears, she pulls the curtains around to explain that I would need two steroid injections 24 hours apart to help mature baby girl’s lungs for early delivery. Even the lovely midwife began to cry…bless her…..
 
(Excerpt from Mayflower’s Rainbow)
 
With a Social Media update…
One steroid jab down another to go, relieved it was in one’s leg and not me arse! Though have a dead leg now! Fingers Crossed they’ll work nicely! X
 
Comments showed how scared we were. We were desperate for those two weeks, we wanted longer.
But there was no way I was leaving that hospital…
I am scared I am going to forget her.
The “bad” days are now very few and far between. I speak about her not as often as I did.
I am scared that the memory of her is so distant, I wonder at times, whether she did happen. Whether she did exist?
For me to speak about her, helps me to feel less scared, that one day I’ll wake up and won’t remember her whole life.
 
 
little daffodils

Together For Yellow – Molly and Grace

Molly and Grace’s Stories.
Massive Perivillous Fibrinoid Deposition (MPFD).

We found out we were pregnant with Molly in mid-December 2010. We were delighted but couldn’t help worry as we had miscarried just 2 months earlier. A scan at 6 weeks showed a little bean, with a flickering heartbeat. We were in love! I spent the next few weeks mostly being sick.
The ‘morning’ sickness continued morning, noon and night. At 16 weeks I had a small bleed. A trip to the maternity unit showed I had a cervical erosion which we were told was nothing to worry about.

We also had the chance to hear baby’s heartbeat through the doppler. In the next few weeks, I started feeling movement. Just before 20 weeks, I had another bleed. Again a trip to the hospital confirmed the erosion was the cause of the bleeding and we had another opportunity to hear the heartbeat.
At 21 weeks, we headed to the hospital for our routine scan. We were shown into the usual room but this time the sonographer did not turn the screen round. All was quiet and I knew something was wrong. She took my hand and said ‘I’m sorry but there is no heartbeat’. I will never forget that
moment. She went to get someone to come and confirm that our baby had died. The next couple of days are a blur. I was given tablets to take and told to come back in 2 days to be induced.
We arrived back at the hospital a couple of days later and were given a side room in the labour ward.
All around us we could hear the cries of healthy newborns. I was given medication to induce labour and the contractions started soon after. That whole day is a blur to me.
Molly was born at 21 weeks on 14th April 2011 at 9:04pm after 11 hours of labour. I didn’t look straight away. The midwife took her away and brought her back to us all clean and wrapped up. I was scared to hold her, scared to touch her. But she was perfection in miniature and so beautiful.


We held her and spoke to her. I was scared to unwrap her and look at her properly. We spent a few hours with her then the midwife took her away. I was in complete shock. I don’t think I would have survived had it not been for my husband. Leaving the hospital the next day, without Molly, was one
of the hardest and most horrendous things I have ever done. Walking away that day was the worst part of the whole experience. We buried our beautiful girl 2 weeks later on a warm, sunny morning.
I have regrets…
…that I didn’t look at her feet, that I didn’t hold her for long enough… I just didn’t know what we were allowed to do and I didn’t have the presence of mind to ask. I look at her footprints and I wish I had looked at her tiny, perfect feet.
July brought results of the tests carried out on my placenta. Molly had been perfect, my body let her down. Placental results showed that she had died due to a very rare condition called Massive Perivillous Fibrinoid Deposition (MPFD). This basically meant that fibroids and clots had formed on
the placenta, gradually taking over until it was no longer fit for purpose and unable to support a growing baby. Consultants put in place a plan for the future: daily aspirin tablets and daily self-administered heparin injections. It was hoped that this combination would stop clots forming and
keep the blood moving through the cord.


We went on to have another early miscarriage at the end of July 2011 and then a pregnancy test on New Year’s Eve confirmed that we were pregnant for the fourth time and, with a treatment plan in place, we were hoping that finally this pregnancy would give us our take home baby. At night, I was
taking my aspirin, folic acid and vitamin D. Also I began injecting the heparin. After a small bleed, we were scanned at 10 weeks for reassurance and all was well. The 12 week scan came around quickly and we were relieved to see our baby waving at us and measuring perfectly for dates.


We were delighted but still very apprehensive. Our next scan was booked in for 15 weeks. At this point, the baby was measuring slightly behind but the sonographer wasn’t worried and said it was normal to be out by a couple of days. We went round to see the consultant to make sure all was
going well with the medication. He offered extra scans for reassurance and we went 2 days later for the first of those scans. A registrar scanned us on a very old machine. She was concerned about the fluid level but, after looking at our scan photos from the hospital she said they were the same and
not to worry about it if the hospital hadn’t mentioned it.
A few days later, I had a major bleed. We went to the hospital. A doppler let us hear a nice strong heartbeat and put my mind at rest a bit. A scan was also arranged for the coming Wednesday when I would be 16 weeks. This was when our world started to crumble all over again.
The scan on Wednesday showed that there was no amniotic fluid and the blood flow through the cord (EDF) was absent. We were devastated and could not believe that it was happening all over again. The doctors advised us that our baby would die within days and that they would scan us
weekly until the inevitable happened. We met with our consultant the following day. He thought it was the same thing again and told us that this was the first time the hospital had dealt with anyone with MPFD. In fact, they hadn’t heard of it before and the treatment we were on had been their best guess.
The 17 week scan showed baby still had a strong heartbeat although growth had majorly slowed down. However, some small pockets of fluid had appeared and EDF was present. This gave us a tiny sliver of hope and the doctors doubled the amount of clexane I was taking. I also began taking
steroids to see if it would help halt the damage to the placenta. It looked like the condition which had taken Molly from us had returned with a vengeance.
By 18 weeks, my bump was popping out and growing well, I was still being sick. The scan showed
our little star was continuing to fight hard. At 20 weeks our little one was still fighting. EDF was present but growth was minimal. We spent the weekend on the coast, remembering Molly on her first birthday and anniversary. We had such a horrendous sense of déjà vu as it was all happening at the same time of year again.
At 21 weeks the heartbeat was still there but the EDF was now absent again. I was advised to stop all the medication.
I woke up a few days later on the 2nd of May and knew our little one was gone. I had movement the night before but I knew when I woke up that something was wrong. A scan later that morning confirmed our little one had died. I was booked in for induction 2 days later.

4th May 2012, 22 weeks pregnant: after 6 hours of labour, Grace came silently into the world at 3:15pm in the same room where Molly had been born. She weighed exactly the same as Molly, perfection in miniature. She looked so serious and deep in thought. She would have been our little
thinker. I wasn’t so scared this time. I held her. I looked at every part of her, including her tiny feet. I didn’t want the same regrets as I had the last time. We cuddled her for hours. The next day, we said our goodbyes. It took us a long time to walk away. Once again, I found this the hardest thing to do. There is nothing worse than walking away and leaving your child behind. It is the most horrendous thing I have ever experienced.


Tests on the placenta confirmed that, like Molly, the placenta was again attacked due to the condition Massive Perivillous Fibrinoid Deposition. They were still not 100% certain of what causes the MPFD to happen, possibly an alloimmune response, possibly an as-yet undiagnosed
thrombophilia issue. They did not commit to either school of thought. What they did say was that the condition was aggressive and recurrent and they were struggling to find anyone else with as severe a condition. We were a unique oddity.

So… they agreed to the treatment plan we had researched that had been successful for people with a similar condition as long as we went into it with eyes open and accept that we were now sailing in unchartered waters with no guarantees. The treatment would include aspirin, high dose folic acid, heparin, steroids and Intralipids.

I became pregnant for the 5th time in Autumn 2012. All was going well. Various early scans had shown a little bean, with a heartbeat, developing well. A scan at 11 weeks showed the heartbeat had stopped. This had been so completely unexpected and I felt completely numb. If anything, I expected the bad news to come as we approached 20 weeks and beyond. I had been taking all my myriad of medications, focusing on getting to that point and then taking it from there. I had injected myself with heparin over 100 times. I had taken over 200 steroid tablets as well as the daily aspirin tablets. I had two intralipid infusions. Folic acid tablets, vitamin D tablets, pregnancy multi-vitamins. All to no avail.
Placental tests came back to show that MPFD had returned with a vengeance despite the extensive treatment plan. Even if the pregnancy had continued beyond 11 weeks, the placenta would never have lasted. We were told that I would highly likely never carry a living child to term and we should start to look into other ways of having a family.


Following our 5th loss, our consultant mentioned surrogacy to us. He felt it would be a good idea for us as our babies were perfectly healthy, it was just my body that was the issue. My sister offered to be our surrogate and kept offering until we decided we would give it a go. We used our own embryos
and my sister was the oven! We became parents to a healthy baby girl in Spring 2014 and we feel so blessed.

MPFD did not make an appearance at all. Surrogacy was such a positive experience for us.
My sister was amazing – she would phone us to come up when baby was moving around so that we could feel her moving. We did worry about how she would feel when baby arrived but the fact that the baby was biologically ours and not hers made that easier for her. We there in theatre when our little one arrived by c-section at 37 weeks. We all cried. My sister felt it was such a different experience to having her own. She said she loved her immediately but didn’t feel the rush of intense love she had experienced when her own daughter had been born. I think this was a relief for us both as we had both been worrying about it. Cara knows she grew in her auntie’s tummy because mine didn’t work. It’s just the way it is. What a fab auntie she has!
So MPFD is a condition I still research and blog about. It is so rare, it is important to me that others find some support. When I initially googled it, all that appeared was a bunch of medical papers that made no sense to me. I want others to be able to find a human face to this and also so have instant
access to research and treatment plans which I have collated along with another mum who has the same condition. I also volunteer with SANDS Lothians – a fantastic charity who were a light for us during very dark times.
Despite everything, we are blessed. Every day our little girl brings us such joy – we are so lucky to have her.


MPFD

You can read more about Massive Perivillous Fibrinoid Deposition here if you are interested:


http://lossthroughthelookingglass.blogspot.co.uk/2012/08/clara-massive-perivillous-fibrinoid.html

little daffodils

Together For Yellow – Alex

Alex’s Story

I’d like to share my little boy’s story.

I conceived my youngest, Alex when Teddy (my eldest) was still very young – there were only 16 months between them when Alex was born. Teddy was born 6 weeks early via emergency c-section but after careful consultation with midwives and a consultant, I chose to deliver Alex via VBAC. The whole way through my pregnancy with him I was terrified he’d be born prematurely too. I feel like I held my breath until we reached the 37-week mark. At 37 weeks and 4 days, I went into labour naturally.

All went well and I quickly made it to the magically 10cm dilated mark. At that point midwives were worried about baby’s heartbeat and called for a doctor. He wanted to try forceps but we rushed to theatre in case. Three attempts at a forceps delivery failed and an emergency c-section was performed.

By the time Alex was pulled out of me, my uterus had ruptured and Alex had been starved of oxygen for an unknown amount of time. But too long. He slipped into the world silent and still. The doctors managed to resuscitate him and rushed him away. He was the transferred to another hospital for cooling treatment to try to prevent secondary brain damage whilst the doctor worked hard to rectify the mess of my insides.

I joined my son that evening, having waited a day for a bed. Tests showed a complete lack of brain stem activity despite my desperate pleas and prayers. The first night of his life he crashed but doctors brought him back as I tried to rush my bruised and broken body down to the NICU. His body showed the trauma he’d been through and we signed a DNR to prevent further trauma. Life support machines kept my son alive for 3 days, but on his fourth day we made the heartbreaking decision to turn them off.

He never opened his eyes.

Never cried.

Never fed or needed a nappy change.

But he made such an imprint on my heart.

I’ll miss him forever.

little daffodils

Together For Yellow – HLHS – Danyl

Danyl’s Story

I found out I was pregnant with twins in April 2017. I was scanned a lot with it being a multiple pregnancy, but was actually signed off as low risk at 16/17 weeks pregnant. We had had growth scans, listened to their hearts and everything seemed healthy. Then at my 20 weeks scan they discovered twin 2 had a problem with his heart.

We were fast-tracked to be scanned at fetal medicine and cardiologists from other hospitals came too. They confirmed he had HLHS at this point. Meaning half his heart didn’t work properly, it was under developed (the left side that pumped oxygenated blood around the body).

From this point we were scanned every week and every week it was like they found another problem. We were advised to terminate because they were really concerned with me progressing with this pregnancy. After reading everything we decided we would go ahead with the pregnancy to give our twin 1, Dylan, the best chance at surviving. We would be monitored and obviously we had to Take our pregnancy day by day.

We had a plan for every situation should the babies have had to be delivered at different points. Towards the end of my pregnancy we had the plan of delivering the babies and then if all was well being transported to the hospice to receive end of life care for Danyl. We were heart broken that we were planning this but we knew the team very well by this point. Then at one of my last scans we were told Danyl was doing so well we may be able to take him home for a few weeks. At this point I asked again if surgery would be an option for us (even though I knew he would never be cured of his defects, surgery would have been palliative too) again we were told that they were very worried about our baby and he wasn’t even here yet.

So we went home to get our heads around the fact we may get to bring our baby home. It was at this point I let my mam and husband try and sort out things for the babies, I hadn’t allowed myself to buy them a single thing because we Genuinely didn’t know if anybody would survive. Anyway fast forward for their birth 12/10/2017 and they were both born and doing well. We were kept in for 5 days. It was so weird getting to know your babies and trying to be happy and grateful for them both arriving but signing DNR forms and knowing one would die.

It was really surreal. It was so scary bringing them both home. Looking at Danyl, he didn’t look poorly. He didn’t need any medical intervention etc and people were genuinely shocked when they saw him. Danyl was at home with us for a year and 10 days. Some days were a real struggle looking after 3 babies under 2 and 1 being seriously ill. We were prepped to go back to the hospice at any point and were told what changes to look for. Changes in feeding, nappy output, visually etc. None of these changes actually came and the day he died was actually just a normal day.

He had a routine check the day before and everything was his normal. Looking back I’m pleased I didn’t see a change. He didn’t look different, he didn’t need any of the drugs we were given etc. He just looked like he always did and he just fell asleep. We are now dealing with the ‘what happens next’ Oliver my eldest receives play therapy from the hospice and we are continuing with counselling etc.

 

 

HLHS – Hypoplastic Left Heart Syndrome is a birth defect, which affects normal blood flow through the heart. This is found during pregnancy when the left side of the heart is found not to be forming correctly.