Making over Motherhood

This week is Maternal Mental Health Awareness week and I have to be honest that I’ve struggled with what exactly to write as although I am a mother and sometimes have struggled with mental health I’m not what you would call a “normal” mother but then I guess no one is truly “normal”.  So for the last day of Maternal Mental Health Awareness Week here is my story of motherhood.

Me with rainbow baby Aurora in Mangawhai New Zealand - Violet Skies
Me with rainbow baby Aurora in Mangawhai New Zealand – Violet Skies

I have friends who have struggled with post-natal depression and know friends whose mother’s have had it 40 years ago when it was dismissed as minor and called the “baby blues”. The difficulty I have is that motherhood for me has been a real rollercoaster.  The struggle for me is writing about my own experience without seeming to diminish anyone else’s experience of post-natal depression.  I have had friends tell me that they feel they can no longer share their tales of depression or worries as they think they seem minor compared to what I have been through and that actually I make them feel worse about themselves because they should be happy when they compare their lives to mine.  Well that doesn’t make me feel guilty, bad or worse at all for sharing!

So apologies in advance if my story of Motherhood makes any of you out there feel worse about your own situations as I don’t want to diminish anyone but hope that by sharing my story some of you who feel alone might feel less so.  

I have never had a “normal” motherhood experience.  I have not known what it is like to go into a baby scan at 20 weeks full of excitement and to come out elated with happy news afterwards.  Our first baby Violet was diagnosed with a heart condition at her 20-week scan.  Our second baby Arthur was diagnosed with a serious brain condition at his 20-week scan resulting in a TFMR at 22 weeks of pregnancy.  Our third baby Aurora luckily had clear baby scans all the way through pregnancy but we never entered a scan room full of excitement or even left elated afterwards, more we left smiling with relief that we hadn’t yet had any bad news.  Those were my three motherhood beginnings already a little different from the majority of mothers out there. You can read more about stress with a rainbow pregnancy here.

When Violet was born we had a natural induced labour as that was deemed the safest for her but she ended up being undiagnosed breach so I had a breach birth naturally with no pain relief.  I am still having counselling for that experience alone, never mind the on going medical treatment because of the wounds I sustained.  Violet was also transferred to Alder Hey hospital shortly after birth without me and at 4 days old she had open-heart surgery with only a 30% chance of success but she survived and the operation was a 100% fix.   It was, at that point, the most stressful time of our lives and we were relieved it was over. We finally took a 2-week-old baby home from hospital with serious health needs; as she needed specialist round the clock care, whilst her heart and rib cage healed up.  You can read more about Violet here. Despite her start she was a healthy little girl who had mild developmental problems because of her surgery and also issues eating solid food, we found that a challenge and extremely frustrating.  However she was extremely clever, musical and a happy little soul considering her start in life.  She was a joy to be around and made everyone who met her happy.  This summarises my first year of motherhood started off extremely stressful and finished happy.

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Me with my angel baby Violet in Cyprus. Violet Skies.

My second year of motherhood wasn’t anywhere near as good as my first!  Violet got sick and was admitted to Manchester Children’s Hospital we sat by her bed for weeks where she finally died suddenly from a rare form of pneumonia aged 15 months.  We had to wait nearly 2 years to find out why she died as the autopsy was inconclusive and so had to endure a coroners inquest too.  You can read more on this here.

My third year of motherhood I think was possibly the most challenging as this year we enjoyed a second pregnancy until the fateful 20 week scan and then, whilst still grieving the loss of our beloved daughter, we lost our son Arthur too.  You can read about it here.

36 weeks pregnant with Aurora at my friends wedding. Violet Skies.
36 weeks pregnant with Aurora at my friends wedding. Violet Skies.

My fourth year of motherhood is still in full swing and I have to say it is by far the best yet as we have our gorgeous rainbow baby Aurora, named after the goddess of the dawn as she has brought light back into our darkness, and she certainly does as she’s a bright, cheerful, smiley little girl.  People looking at our social media feed might be forgiven for thinking our lives are pure happiness now but as anyone who has suffered child loss will know they aren’t.  The happy days are still tinged with sadness, as to what should be and what we are missing. For example the other day I was “subjected” to a conversation by other mothers talking about how lovely it is that their three year olds and their babies play together and interact now all the time; well that’s what we should have Violet as a big sister playing with her younger siblings but instead Aurora will grow up alone.  Having grown up with a brother and sister that thought alone makes me want to cry,, as my siblings are still close to me and we remain an important part of each other’s lives.

Brother & sister – Violet & Aurora’s gorgeous cousins

I still have regular counselling to help me to try to deal with everything as I have horrendous nightmares on a regular basis, sometimes extreme anxiety and times when I feel sad.  I also have PTSD (read more here) caused by my first birth experience, my daughter having open-heart surgery and also from watching her die. I am told all this is “normal” for a grieving parent but it does draw parallels with how other mums say they feel who have post-natal depression, so whilst I don’t know what it is like to have a relatively normal experience of motherhood and still feel depressed, I do understand and have lived through all these feelings on a fairly regular basis.

I feel that lots of health visitors also need more training and guidance for how to deal with mothers who perhaps are slightly more fragile mentally than others.  This is in light of a recent experience I had with a health visitor who reduced me from a confident mum of a rainbow baby to a crying anxious mess in the space of one baby weigh in session.

I also feel that more support should also be given to fathers as often they have no support at all especially after the loss of a child or after they have witnessed a horrendous birth.  They can suffer PTSD too.

Sending all mothers (and fathers) out there lots of love as parenthood can be tough whether it is simply sleepless nights or sitting by a sick child in a hospital bed or crying at a graveside.  At the end of the day everything is relative to your previous experiences too.  I thought the toughest thing I had to endure was watching my child sick in hospital that was until they died. Motherhood can be beautiful and wonderful but it can also be extremely cruel. 

Big love,

Always Violet Skies x

Want to read more then maybe read –

More of a mother – does a natural birth make you more of a mother?

Somewhere after the rainbow – what happens if you lose your rainbow?

Mothering after loss

Guilt when a mother of loss

Tommy’s Angels

A few weeks ago we were invited into St Mary’s hospital for a pleasant reason for a change.  We were one of 180 sets of parents to be invited to attend Tommy’s the Baby Charity’s afternoon tea party for all the rainbow babies born in their care in 2018.

The parents and families (some siblings came along too) and 180 little rainbow babies all born in 2018 gathered together for the first time to celebrate life. It was so magical seeing all the people that had been helped by the charity.

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Tommy’s Afternoon tea party for 2018 Rainbow Babies

For those of you who aren’t familiar with the charity it was set up to initially help those who had suffered stillbirth and multiple miscarriages.  The charity spearheads research into the conditions and looks at preventative measures to try to safeguard pregnancy ensuring a healthy outcome for mother and baby.

This weekend I visited the Leonardo Di Vinci exhibition at Manchester Art Gallery and highly recommend it, as it is amazing.  I always knew Leonardo was a genius but I discovered in this exhibition that his work actually led to changing the perception of how babies develop in the womb and he was the one that figured out that the umbilical cord feeds them too.  He also discovered that the heart circulates blood around the body in the 1480’s and looked at how it feeds the main organs.

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Leonardo’s study of human anatomy and specifically the circulatory system

Without Leonardo we wouldn’t have had the foundation for midwifery and then institutions like Tommy’s.  What is a surprise I found is how little we have actually progressed since his discovery in the 1500s as the questions as to why babies die or why women miscarry are still needing to be answered today and those answers are being discovered thanks to Tommy’s.

Tommy’s Manchester clinic offered me careful monitoring during my pregnancy with Aurora, after our 20 week scan, to closely keep an eye on her but also to help me to manage my stress levels too. The aim is for those child loss victims, who have lost several babies, to get reassurance that any issues or changes can be spotted by regular scans.  They also checked things like blood flow through the umbilical cord, that the placenta was working ok, checked the Aurora’s growth, fluid levels in the womb and in my case, because of my broken heart, the blood supply into the womb too.

All of these checks helped to give me peace of mind during what was an extremely stressful and worrying time.  I lived life while I was pregnant from one milestone to the next so each 3 weeks until my next scan was a mini countdown and we celebrated after each one gave us positive news.  Although it still didn’t make me worry less as of course we had been told previously by experts during Arthur’s pregnancy in early scans that things were ok and also by Violet’s cardiologist that her heart was ok “nothing to worry about” and then it contributed to her death.  So to say I was skeptical about what “experts” told me was an understatement but you know what?  The Tommy’s experts or as I like to call them Angels were right!

So the afternoon tea enabled the midwives, who had taken good care of us, and the head of the Tommy’s clinic Doctor Alex to finally meet Aurora in the flesh.  The last time they had seen her she was on a black and white screen during ultra sound scans.  It was great for then to finally get to hold and meet her. To find out that the little hyperactive baby on their screens was a fidget in real life too.

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Aurora with one of our “Tommy’s Angels”

Tommy’s also have places in the Manchester 10k so if any of you out there would like to run for them and raise some money to help others like us then we would be very grateful you can get more information to register here.

Unfortunately with my poor heart health we’re not in a position to be able to take part so we have pledged to raise funds for them after we hit our Alder Hey fund target in some other way instead.  Would you come to a tea party in the summer perhaps and help us to thank our Tommy’s angels?

Also make sure you visit the Leonardo Da Vinci exhibition more details click here.

Love

Sarah xx

Our second rainbow

This was the best kept secret until recently as anyone can testify if they have bumped into me, as at 34 weeks pregnant with my third pregnancy I’m now pretty big.

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Those of you who regularly read my blog you will know that I like to write in a very honest and frank way so I apologise if I haven’t been forthcoming about this massive development in my life and hope that after reading this post you can understand why.

We were lucky enough to fall pregnant again pretty soon after the loss of our baby Arthur and unfortunately were told that there would be a 50/50 chance of the new baby having similar brain issues, as it’s older brother and that we wouldn’t know if it had these issues until the 20 week scan.  So we would have to wait 5 months until we knew if our pregnancy would be viable or not.

In the meantime we were of course offered additional scans so we had one at 7 weeks, 12 weeks and another at 16 weeks where they checked baby’s heart.  At the 16-week check we discovered that unlike Violet’s heart the new baby’s heart was perfectly formed and we had received this news about Arthur’s heart at 16-weeks too.  So although it was good news we weren’t celebrating yet.

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Baby at 12 week scan

I remember after our 16-week scan with Arthur we had been so happy that his heart was ok and felt so lucky, relieved and excited we told friends and family we were pregnant.  Everyone of course was delighted for us especially after the loss of Violet. Then after Arthur’s 20-week scan we got the devastating news about his severe brain condition and our entire world collapsed.

For this very reason we refrained from telling our close friends about the new pregnancy until after our 20 week scan.  This scan turned out to be the very first 20 week scan we have ever had that hasn’t resulted in us being pulled into a separate room to be spoken to by specialists and midwife counselors.  The first 20-week scan we have had that hasn’t resulted in us having to have a second follow up scan with a more senior specialist a week later. So when the two specialists that performed our 20-week scan told us that the baby was perfectly healthy we didn’t know what to say.  We were in total shock.  We were asked if we had any questions and all we could think of was “what do we do now?” We were told we could leave and come back for another scan with a specialist at 28 weeks.

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Baby at 20 weeks refusing to have a photo taken turning away!

Since then we have been waiting for a phone call or letter from the hospital to say that they are sorry but they have made a mistake.  We had the second specialist scan at 28 weeks and again we prepared ourselves for the knock out punch but that didn’t come, again we were given positive news.  To anyone reading this we must sound ungrateful but we were just so used to being given bad news whether it was devastating or minor bad news that we almost couldn’t believe what we were hearing.

We currently have a minimum of one baby or pregnancy related appointment each week either to monitor my heart (as I have an ASD see my post about a broken heart), to check baby’s growth (the amazing Tommy’s clinic gives us a scan every 3 weeks), child loss counseling or midwife appointments.  I’m under so many different departments and teams that we have gone from having an horrendous level of obstetric care when we had Violet to now having lots of specialists who all know who we are and will give us priority level care.  The NHS now feels like it is working for us!

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With my sister at the baby shower she & my sister-in-law kindly organised for me

I’ve recently been to a few different Manchester events and I’ve bumped into so many people now that I think most know about our impending arrival.  People constantly ask me whether I’m excited about the new baby and the truthful answer is simply that I will be relieved when baby is here safe and well, when I can see with my own eyes.  Until then I can only try to be hopeful for the future.

Thanks for reading.

Sarah x

Somewhere after the rainbow

Everyone talks about “rainbow” pregnancies and what a blessing they are.

It is very true that when we were expecting Arthur we were overjoyed and all of a sudden we had a new lease of life.  We had hope for our future, as a family and truly believed the sun was shining on us again.

Yes we were still immensely sad about Violet and our grief for her was still strong but we had a renewed sense of optimism towards the future especially after we had Arthur’s 16 week scan and they confirmed that unlike Violet’s his heart looked ok.  We were ecstatic and so relieved that we genuinely looked forward to his 20 week scan as they would double check his heart again in more detail but if there were any slight abnormalities then they would be minor.

Arthur scan

We were so pleased and reassured by his 16 week scan results that we even felt confident enough to let friends and others know we were now expecting.  That in January 2018 Violet was going to be a big sister.

Then we had the 20-week scan.  Arthur’s heart did still look ok but what didn’t look right was his brain.  The sonographer wouldn’t/couldn’t tell us too much other than his brain didn’t look how it was supposed to look and she would have to refer us to a top specialist.  Our world crumbled.  We then had to wait over a week before we could see a specialist to get more details.

We were heartbroken. The fact that something might have been wrong with his brain hadn’t even dawned on us, as we almost expected a heart defect and as we knew from our experience with Violet that wouldn’t necessarily have been a deal breaker as a heart can be fixed but a brain?  The interim week waiting to see the specialist was one of the longest in our lives and in the meantime I could feel little Arthur kicking and wriggling around much more hyperactive than Violet had been.

When we finally saw the specialist he explained that Arthur’s brain had declined and become even more severe, just in the week since our previous scan.  The issue was the amount of fluid in his brain, which was already so vast it had crushed most remaining parts of the brain including the area responsible for reflex and animal impulses like breathing and swallowing. The increased movement from Arthur was put down to the nerves being over stimulated by the fluid sloshing around his brain.  His symptoms weren’t even anywhere near the borderline and in fact he was so beyond this that the prognosis was that he might at best reach 30 weeks of pregnancy and then would die.  His head would be so large and full of fluid that he wouldn’t be able to be birthed and would have to be removed through caesarean section, which could have complications for me too and given my age we were told if we still wanted other children then losing him earlier would be the kindest option for everyone.

We explored every alternative but I couldn’t bear the thought of my little boy suffering (incidentally his deformity had affected him so badly that they couldn’t even identify his gender through the scan) and it wasn’t until I birthed him at 22 weeks that we realised he was a little boy.  Having to end his life was the hardest decision we have ever had to make but the thought of him suffering and declining further was too much to bear. Having to give birth to him was traumatic and extremely upsetting.  We did get to meet our little boy while he still looked like a healthy but tiny baby and he was beautiful like a miniature version of his daddy with dark brown hair.  We spent several days saying goodbye to him in hospital and gave him a funeral service before burying his ashes with his sister almost a year to the day that we lost her too.

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We will never forget our little boy and we miss him more than imaginable but it is a very different type of grief to that that we have over Violet. We knew her, shared experiences together, heard her laugh, babble away incessantly and have a million photos of her that we can look at too.  In a way this makes it easier as we have constant beautiful reminders of our memories of Violet.  I find I’m much angrier at the world over Violet because she had battled and overcome so much in her short life that it feels much more cruel for her to have been taken away as she was.

Grieving Arthur is much more difficult as his loss so early was our decision however his brain abnormalities weren’t and he would never have survived to full term anyway.  Never been able to breathe or swallow unaided if he had survived to full term.  It is the cruelty of us having to endure this on top of losing Violet that I find very hard to bear.  I remember screaming “how much pain do they want us to go through”, “what have we done to deserve this” and “how cruel is the world”.

People talk about rainbow babies and how they are “God’s gift” well Arthur did fill us with hope for the future before it was cruelly ripped from us again.  I’m often asked why I don’t believe in God and this is the reason why.

Now we are struggling to discover what there is “somewhere over the rainbow” or as I like to say we are somewhere after the rainbow; what happens when you’ve had a rainbow and it is faded and disappeared?

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We look for the next one I guess and try to keep positive.

Lots of love

Sarah x