We all have a story to tell

Have you ever sat at a group of people who are sharing stories or discussing topics that you are completely unable to relate to? You sit quietly on the side, with nothing to contribute, awkwardly awaiting a welcome change in topic to something more relatable, something that you can share in?

I’ve always struggled to be a part of most conversations which revolve around the stereotypical feminine conversations. I couldn’t find anything more tedious than shopping or discussing the perfect pair of stilettos ( and I loved stilettos). I always found myself gravitating toward mixed sex groups or even the guys only groups at parties, the topics of discussion were more appealing for me, and not about ‘Sharon’ who’d shagged so and so, boyfriend/husband or who had the best sale on shoes that weekend. Yeah, I’m stereotyping, but bare with me for a little bit longer.  Not being able to relate or contribute didn’t mean that I didn’t want to.  I longed to fit into one of these little cliques. With pregnancy I saw a window of possibility. For once I would be able to relate, share stories and not just sit on the side-lines, struggling to understand why a specific topic was so damn interesting to everyone but me.

My pregnancy and our daughters’ birth was not easy. It was terrible to be perfectly honest. In between first trimester sickness, low blood pressure from the summer heat and being diagnosed with a life threatening illness I had possibly two weeks of pregnancy bliss.  In the early days of this blog, when there was still a glimmer of hope of being able to carry Charlotte to term, I shared a bit of my pregnancy ‘glow’, which was more like being torched at the stake like a Salem Witch than a joyous pregnancy glow.

My pregnancy was downright horrific. So much so, that the idea of ever falling pregnant again has me losing my breath and raising my body temperature. 

The trauma we experienced as a result of my pregnancy complications and her early birth is not something that I ever expected to have such a lasting impact on me. Once we’d walked out the NICU I somehow expected it to be put to bed, a chapter that had ended to be replaced by the blessing of having our daughter alive and healthy. That having her home would be enough to vanquish the demons of our experiences.  But as most preemie parents will know, it never truly leaves our hearts and minds.

Don’t get me wrong. I’ve made peace with our journey.  What is done cannot be undone. I’m completely comfortable in the knowledge that another child is not likely to be part of our family’s story.  I’m proud of our journey and all that we have overcome. But our story is a difficult one for many others to process.

And with my pregnancy came a few weeks of meeting with similarly expectant mothers in online support groups and coffee dates. Discussions about weird cravings, the glow everyone experiences, the flutters and kicks, increased hormone levels.  I felt nothing but sick all the way through to 26 weeks and 3 days of pregnancy. I couldn’t stand the sight of meat. I felt permanently nauseous. I felt feint in the summer heat. My feet swelled. I was a downright miserable mess.

And for two beautiful weeks I felt it, I could relate to other expectant women! It felt great to finally feel like I fitted into something special that so many other women experience.  And then it all went to shit as you know by now. And the group of women and parents who I am able to relate to dwindled, dramatically, to a small niche circle of women who share experiences and stories that no family or person should ever have to experience.

I still see it when I’m in a new mom group that I’ve met. When everyone is sharing their birthing stories, the laughable moments relating to the first poop, maternity pads and when almost everyone in the ward sees your breasts when you first try breastfeeding. I share in the laughter and can even relate to a few of them, there was a time where I couldn’t even sit through one of these discussions.

Through the natural progress of development which comes from child rearing I’ve met new mothers, new groups of parents and find myself joining little meetups and coffee dates.

But there always comes a point at these meetups when someone new turns to me and asks how our birth story was.  Along with the question, inevitably someone will blurt out that we have a miracle baby, or give a look of pity in my direction because our story is not easy to hear. The moments that I now deem laughable are either unrelatabele or are overshadowed by the rest of our story.  If I do go ahead and tell our story it’s more often than not met with uncomfortable faces, condolences and awkward silences. So instead I tend to sit back silently and listen to others tell theirs or simply say that mine is far too boring to chat about.

Sharing a story like ours can be tricky. It is one of the main reasons why I love to share on Instagram and on my blog. Because there are so many like-minded parents out there who have experienced the same and sadly, far worse than what we have.  Who understand how uncomfortable sharing our story can make others.  They understand that we do want to talk about our journey for sympathy hugs and looks, but because it is our story, it’s all we know, it’s what we experienced and for us it’s likely the only pregnancy experience we will ever have. We fought for our children, and they fought to survive.  It’s something to be proud of, but talking about it publicly makes many people uncomfortable.

I find as well that I’m fairly reserved and quiet about pregnancy when friends announce they are expecting. I’m beyond thrilled for them. I cry tears of joy for them and sorrow for us in the privacy of my bathroom.  When they reach mile markers that for us resulted in diagnoses or delivery I’m torn between absolute relief that they are unlikely to travel our journey, envious that they were able to get so far without falling ill like me and then wracked with absolute guilt for being jealous over their health and great fortune.

I have statistics and facts ingrained into my head from weeks of research on the topics of pregnancy related problems, preeclampsia and HELLP syndrome. I find myself catching my breath when someone says they have crossed the 12 week marker and are now considered a ‘safe’ pregnancy. I know what can go wrong. I experienced it first-hand.  I want to warn them that up until the day they hold their babies in their arms that they are not safe, that something can still go wrong. But I keep quiet, because striking fear in my friends is not something I want to be responsible for. When a friends pregnant feet swell up, I immediately want to rush them to a hospital for a urine test my brain jumps to the worst case scenario, because that was my only experience in both pregnancies. I know no different and am unlikely to ever experience a ‘normal’ pregnancy.

Whether we have picture perfect pregnancies, pregnancy related problems ranging from minor to severe, whether we are fortunate or not to have our children survive or pass on, we want to share our stories, because they are our stories.

So spare a thought for the mom who is basking in all the glory of the perfect pregnancy, she is truly blessed and fortunate and deserves to be proud of it, even if you are tired of her one hundred daily posts about how blessed she is, because she honestly is blessed. Share in the moment with her. But don’t forget to validate others experiences, even if they make you uncomfortable. I guarantee we all want to share our journeys, no matter the ending result. Don’t ignore friends who have experienced a tragic loss because discussing the death of their child makes you uncomfortable.

We all have a story to tell!

Time stands still for no one.

Time never stood still when I sat beside my dad on his last night. Our world grew quiet, it certainly felt slower, but it never stopped. The nurses gave us space and carried on with their duties.  I sat drinking hot chocolate at 2am, talking softly to him with a half finished game of soduko resting on my lap.  That evening felt like it would never end and suddenly it was over in a fleeting moment.

All while the world around us seemingly remained unchanged and carried on as though nothing was amiss.

When I was on the farm, with my ‘nephew’ nestled snuggly asleep on my lap. While I was cracking jokes with my friends and fiancé in the car, on our way to our cottage to collect drinks and snacks. The world gave no indication that my mother had left us. The world ignored our loss, time did not stop and everything around me continued on as though nothing was amiss.

We all wish for the world to stop moving though, for time to stop, if even only for just a second. We wish for it to recognise the loss of someone so unique, blessed and special to us. We wish for that little extra time with loved ones. Time to process what’s just happened. Time to make sense of it all. How can we not expect it to not stop, or pause at the very least, when our world is so drastically altered forever. How can the world simply continue as if nothing has changed, when everything has.

Our family has lost many loved ones this year and in recent years, too many losses for one family to bare. I know of other families who have suffered similar losses in theirs. And no doubt, across the globe families are enduring losses which crush their hearts and bring their own worlds to a standstill.

But they live on in our memories and our stories. They live on in their loved ones and in the impacts, marks and deep etches which they have made in our  worlds, and the greater world beyond.

We have no control over time, we cannot slow it down. We cannot predict how much of it we have each been given. Some people seemingly drew the incredibly unfair short straw, while others who don’t appear to deserve it have it in abundance and a rare few are fortunate enough to live an extensive, long and fruitful life.

On this last Thursday someone who deserved every second of every day, and so much more, left this earth.

A formidably strong, yet gentle, dedicated, loving and passionate woman. Who stopped at nothing to provide for her children, in less than ideal circumstances. A woman who became a widow in her early thirties with 3 young children in tow. Who taught her children to drive in spite of never having driven herself. Who worked 3 jobs at times to provide for her family, and always had place for anyone who needed a helping hand. Who raised not only her own children, but her grand children as well. Who stubbornly watched as her quaint little suburb and street was slowly taken over by drug lords and addicts who regarded her as their ouma and ensured nobody ever entered her property or caused her harm.  Who took great pride in her beautiful flower garden.  Who was always available to embrace and love you, yet equally quick to call you out on your bullshit with deep love and honesty. Someone who sat for hours on end, crocheting the most intricate items, from cushion covers, doilies, pot plant holder, dollies, socks and everything between. Who swore blindly every year, for as long as I can remember, that she would never again crochet socks for her entire family, knowing full well she’d be doing the very same thing the following year. Who made the best dam roast chicken and cookies in the world.  Who marvelled in our miracle daughter and even on days where she had little to no energy, was always able to offer at the very least, a smile and quick chat to Charlotte and share a biscuit with her.

She was a daughter, a sister to four siblings, a wife, a mother to three children, grandmother to 8, great grandmother to 6 and great great grandmother to 3. A shoulder to cry on, the voice of reason and logic, the provider of tough love and so much more.

Ouma in front of her little house with her beloved flowers

When I sat with her three days ago, I knew our time with her was limited. I wanted the world to slow down and stop for a moment. I wanted for it to acknowledge her greatness and impact. How could it not???

Yesterday morning she left this world, after spending 96 years here. Deeply etching herself into its surface and in the generations of our family who have followed in her footsteps. The word didn’t stop at the news. But our part of it grew quieter, sadder, and a hole was created that will never be filled.

Knowing that time stands still for no one does not mean that their loss is insignificant though. As her family and loved ones move forward in life without her physical presence, we are reminded that we are never truly without her. We are on this earth because of her. We grew up with the passion, love, morals, ethics and skills taught by her. And so shall our daughter be raised. Knowing that she comes from a long line of incredibly strong willed, compassionate and determined women who have shaped her before she was even born, to live life to her full potential, seizing every precious moment.

There is a strange and beautiful calm in knowing the world doesn’t stop turning in these moments. That, in spite of our losses, joys, sorrows and mistakes, that the world hasn’t come to a complete standstill. That tomorrow there is still an opportunity for us to make right, find love, discover new talents, embrace new friends. After all, time doesn’t stand still for anyone and the world doesn’t stop moving. We aren’t all promised tomorrow, so best we do the very best with the days which we have.  None of this is in our power to predict or control. What we do have control and power over is how we choose to spend it, and with whom.

I see reminders of my parents in my beautiful daughter daily. My moms infectious, delightful laughter. My dads cheeky grin, his sharp features and old soul eyes in her face. She never got to meet them, so it’s up to me to ensure that she knows what remarkable grandparents she had as she grows.

Two incredible women meet for the first time.

Sharing biscuits and no doubt catching up on all the latest skinner (gossip)

Our daughter also has such compassion and determination. With a truck load of stubbornness that will no doubt see her well in life, and which more often than not has us torn between pride and frustration depending on how she chooses to implement it. These traits she has inherited from her great grandmother. My ouma.

Ouma Tina in 1946

Ouma Tina in 1976

Christmas 2007. Ouma with her 3 children and some of the generations who have followed.

Christmas 2011

 

Rus in vrede liewe Ouma.
Ons sal jou altyd lief hé en jy sal nooit uit ons harte stap nie.

Everything happens for a reason

“Everything happens for a reason”

It is one of those phrases often offered up as reassurance that whatever devastating or stressful circumstance has occurred, is somehow justifiable.  It also happens to be one of the most cruel and senseless sentences offered to someone in situations where lifes injustices just do not make any fathomable sense whatsoever.

I remember hearing these words when we had to terminate our first pregnancy with a D&C surgical procedure.  I was told this when our daughter was born 14 weeks premature. And once even had this sentiment thrown at me when I discussed my daughters survival rates with someone.  “Just remember, everything happens for a reason” As if this is any consolation for our fears and grief.

In a month which honours pregnancy and infant loss I have seen so many posts online where these hollow words have been offered as some form of comfort and solace. Please let it be known, these words do nothing to comfort someone experiencing a loss.  It will stay in our hearts and memories for as long as we live and breathe. It will never make sense.

I knew within days that I was pregnant. I instinctively knew something was different. But I brushed it aside and went on with my life. Until a few weeks later when I knew I had to confirm my suspicions and blood tests confirmed it.  I was beyond terrified and shocked. We didn’t want children. We had never planned a future which included us having to care for a little person.

But we grew excited at the prospect and opened ourselves up to the life we would now be leading. It never occurred to us that something could go wrong. Nobody in our circle of friends ever spoke of miscarriage or infant loss. So at our second ultrasound when there was no heartbeat we were blindsided.  Our baby had stopped growing, but my body had not recognised it’s failure to develop further.

Our elation instantly turned to devastation. The little life we had grown excited for was over, before we had even seen a heartbeat.

The problem with the pregnancy is what is referred to as a Blighted Ovum and is when a fertilized egg attaches to the uterine wall but fails to develop at all, or stops developing in the very early stages.  The body has not recognized the failure of development and the placenta continues to grow whilst all normal pregnancy symptoms are present and HCG counts continuously increase, as would occur in a normal pregnancy.

A blighted ovum accounts for almost 50% of first trimester miscarriages and most women are not even aware that they were pregnant to begin with. While the causes are not completely known, there are studies which suggest this occurs because a woman’s body recognises abnormal chromosomes within the foetus and naturally does not allow the development to continue as the foetus is unlikely to develop into a healthy infant.

The loss we experienced changed our lives as it does for many.  Over time though I have learnt that this loss is not considered real for others. I recall a woman once saying to me ‘Oh, that’s not a loss, that was a fake pregnancy, why make such a big deal about it’. I didn’t respond, but her comment was cold and cruel beyond any reasonable means.  I recall sometime later that someone asked me about my daughter (who was still in NICU after being born 14 weeks premature) and the very same woman turned around and asked me if my baby was a vegetable.

The world is full of these types of people. As a fellow blogger stated this morning ‘Some people are born with compassion and empathy in their soul, I firmly believe it’s not a skill you can be taught.. it is something you either have or you don’t’  And she is 100% correct in this.  Yes, we sometimes struggle to know what to say or how to offer support, but that is very different to being completely incapable of showing compassion and respect for someone else’s very real loss.

I have spoken and offered support to so many woman who have faced premature birth or infant loss over the last two and a half years and I still struggle to find the right words to offer my love and support. For each and every one of them their journey has been a struggle, many were not able to take their beautiful children home and with each loss experienced I was wracked with heartache, injustice and a terrible guilt knowing that I was one of the lucky few who were blessed with a surviving infant.  I wanted to promised each and every one of them that their stories would end as ours had, but life is not fair. Life flings shit at us that makes absolutely no sense. And none of it ‘happens for a reason’.

So spare a thought this month for loved ones who have loved and lost, be it at 6 weeks, 6 months, full term or after birth. Nothing in this world is promised to us. Nothing is guaranteed.  Much of what happens is beyond our control. But what we can control is our compassion and respect for everyone experiencing a loss.

Why women are ‘paranoid’

I stood this morning with my daughter in my arms and watched my husband climb into his car and leave for work.  Nothing out of the ordinary you would think.  But the minor actions of his movements and choices struck a chord with me. Particularly with the current #metoo and #ifmenhadacurfew movements rocketing through social media.

He was calm, secure and confident in his movements and choices. There was no fear or paranoia present in his actions.  He closed the front door and didn’t think twice about leaving the security gate open and unlocked.  He nonchalantly clicked the button on the gate remote whilst walking to his car, blissfully ignorant that he had opened himself up for a possible attack if someone saw an opportunity and noticed his lapse of judgement. He climbed into his car, with his back to the gate. I know that he confidently drove all the way to his office without locking the doors of his vehicle.

Completely and blissfully unaware that these tiny actions are not one that any woman is comfortable doing, particularly in South Africa.

We’ve had this discussion about security and vigilance ad nauseam. It’s become somewhat of a game if you will, for me to remind him before we leave our property to ensure that he remembered to lock the doors.  The possibility of becoming a victim of an attack is not one which crosses his mind often, or if at all.  Based on chatter at get togethers with friends, I am not alone in my ‘paranoia’ and neither is he in his mindset of ‘my wife is paranoid’.  Men and women live in different universes in terms of safety.

I have always been vigilant and aware of my surroundings, my vulnerability and of our socioeconomic circumstances of our country resulting in increasingly brutal and aggressive assaults on women in particular.  We are alert when shopping, clutching onto our handbags as though they contain the holy grail.  We observe the movements of any person who happens to be standing in a parking lot nearby us when entering or exiting our vehicles. We don’t dare walk alone in the dark. We don’t dare dream of going for a job after sunset, especially alone. We don’t dare go into a public toilet on the beachfront or remote shopping centres. We don’t dare pull roadside to tend to a flat tyre or rogue toddler who has houdinied their way out of their safety seat. We don’t go for a walk on the beach alone. We send links of our Uber rides to our partners and loved ones. We give them names and addresses of clients we are going to meet, and let them know when we’ve left safely.

None of these things cross my husbands minds.  That they are a daily reality for me and most women is something which is incomprehensible for him.  How one person can live with such fear and uncertainty.

My concerns have always been there.

I have my own #metoo stories which I’ve shared with close friends. A man who stalked me for several years, who knew my every movement, who followed me everywhere, who confronted me at my car one night in a dark parking lot, who followed me to the beach for a solo stroll one evening, who sent me lewd messages, who tracked down my new cellphone number everytime I changed it and who finally was able to drug my drink and take me to a secluded spot on the beachfront and attempted to rape me.  The police officers who found me did nothing. He had not kidnapped me, he had not raped me, harassment via texts and phone calls was not yet against the law. My clothing also indicated that I was looking for attention, so I had only myself to blame for getting into that situation.  I was groped and grabbed more than once in my 20’s while out clubbing.

I was once thrown out of a club for punching a man who stuck his hand under my skirt and grabbed me.  He was not reprimanded, but I was thrown out for defending myself.  I was grabbed and taken behind a curtain at a local Octoberfest and felt up by a trusted friend. Again I was reprimanded because I had been drinking and was clearly looking for trouble for dancing and drinking.  Clearly the onus is on a women to dress like a nun and sit in a corner, the prospect that a man is incapable of keeping his hands to himself is an impossible one if my experiences are anything to go by.

Women live in fear of being assaulted and victimised every day. It has become so much a part of our reality that it is commonplace for us to behave and observe in ways which men simply cannot understand.

One thread on Twitter asked women what they would do if men had a curfew.  The results were astounding and a complete eye opener for many.  Simple tasks and pleasures which men take for granted are luxuries or completely impossible for us.

Through all of this I am also raising a daughter. Someone who falls into the most vulnerable category of sexes.  I want her to be strong, independent and resourceful.  I also want her safe.  I love that she is naturally a social and outgoing person, but her ability to run into anyone’s arms, blindly trusting that she is safe and secure with them, terrifies me. At the tender age of 2.5 years, how do you even begin to explain the threat that people could pose, without destroying her blossoming personality, trust and independence?

How do I begin to explain to her that because of her privilege she is already at a disadvantage and already resented by so many.  How do I teach her how to embrace human nature and love openly, when I eye most people with trepidation, fear and distrust myself?

For now I task myself with the role of tutor, mentor and guardian of her. Ensuring her safety in our home and especially out in public. I encourage her freedom to greet, wave and high five anyone who greets her and respect her decision not to hug or greet someone if she is not comfortable with them. As she grows older we will broach more delicate subject matter surrounding what constitutes appropriate physical and emotional contact and abuse.

These are important lessons to teach our children. They need to know right from wrong. They need to know what is acceptable and not acceptable behaviour, towards themselves, and others. Without our guidance how are they to know how to tell the difference between appropriate and inappropriate behaviour?

So, while I watch my daughter take a nap, blissfully unaware of the dangers which she unknowingly faces every day, I take comfort in the knowledge that so far today, her world is perfect and safe. Tomorrow is another day.

I am also grateful for the role model that her father, my brother and a few close family and friends are for her.  Men who can show her what it is to be loved and respected by the opposite sex. How a woman should be treated and expect to be treated, without compromise.

By teaching new generations how to respect one another, knowing right from wrong and letting them know that there is no shame in coming forward in the horrific event that someone has hurt them is vital in ensuring future generations safety and security in their lives and freedom.

Preeclampsia, Eclampsia and HELLP syndrome.

Beyonce recently shared some insight into the pregnancy and delivery of her birth (link ). It highlighted her experience with what she referred to as ‘Toxemia’. Toxemia is an ‘out of practice’ name for preeclampsia. It may also be termed as PIH (pregnancy induced hypertension) in certain countries.

Preeclampsia affects 5-10% of pregnancies. Most often it occurs late in the third trimester of pregnancy, but it may develop anytime from 20 weeks gestation and in very rare cases, before 20 weeks.

Most cases of preclampsia will result in the birth of a healthy baby because statistically, most pregnant women who develop it will do so in the last few
weeks of pregnancy (34 weeks-40/41 weeks) which is when a foetus is classified as either ‘moderately premature’, ‘late pre-term’ or full term. Their organs and lungs in particular are almost fully developed and they have received much of their required immunities from their mother.

Hypertensive disorders such as preeclampsia account for up to 14% of preterm birth (before 36 weeks gestation).

Preeclampsia accounts for almost 13% of maternal deaths worldwide which translates into a resultant maternal death every 12 minutes in the world.

While these statistics are staggering, many expectant women are not made aware of this potentially life threatening illness. The symptoms themselves may often be mistaken for normal pregnancy related side effects and as a result it can be easy to miss or misdiagnose initially.

Most cases of preeclampsia aren’t initially noticeable because many of them are so easily relatable to normal pregnancy side effects, but a combination of
symptoms or persistant issues should have you seeing your gynae for a checkup.

The most common symptoms are
* headaches;
* blurred vision;
* upper abdominal pain;
* dramatic and sudden weight gain; and
* decreased urine output.

If left undiagnosed, cases of preeclampsia can progress into eclampsia, which can result in seizures or strokes.

But what exactly is Preeclampsia? Essentially it is a combination of increased blood pressure and elevated protein levels in your urine. It may also result in low blood clotting factors, kidney and liver complications. It affects the blood flow to the placenta, often leading to smaller or prematurely born babies as a result of slowed or restricted growth, lower than normal birth weights and increased infant mortality rates. Most commonly, an infant born as a result of preeclampsia or eclampsia is often referred to as an IUGR (Intrauterine growth restriction) baby because of their smaller size and weight.

Another development of preeclampsia and eclampsia which can occur, as the illness progresses, is HELLP (haemolysis, elevated liver enzymes, low platelet count) syndrome. Statistically up to 15% of sufferers of preeclampsia will progress into HELLP syndrome. The global mortality rate for HELLP syndrome is a staggering 25%. Typically symptoms of HELLP syndrome are

* Headaches;
* Nausea, vomiting and indigestion with pain after eating;
* Abdominal or chest tenderness at the base of your rib cage (from liver distention);
* Shoulder pain or pain when breathing deeply (fluid builds up in your lungs which creates difficulty in breathing);
* Bleeding;
* Blurred vision; and
* Edema (swlling) in limbs.

Testing blood pressure and protein levels in your urine are methods to test for HELLP syndrome.

HELLP syndome can also present itself in mothers without the presence of preeclampsia or eclampsia, and in rare occurances may even occur after childbirth.

The only known cures for preeclampsia, eclampsia and HELLP syndrome is child birth and the removal of the placenta. This is not guaranteed to be an instantaneous cure however, many women still experience issues for weeks, months and sometimes years after the birth of their child.

While the exact cause for developing preeclampsia, eclampsia and HELLP syndrome is not yet fully understood, there are certain genetic and environmental factors which likely contribute to the increased of likelihood of developing these or all of these illnesses:

* Your age: teenagers and women over the age of 40 are at greatest risk;
* If you experienced preeclampsia or eclampsia in a previous pregnancy;
* Obesity;
* A history of high blood pressure prior to pregnancy;
* A pregnancy as a result of egg donation or donor sperm insemination;
* Having a mother, sister or close family relative who had preeclampsia;
* Having Diabetes, Lupus, Rheumatoid Arthritis, certain Kidney diseases, sickl     cell disease; and
* Having a multiple gestation (2 or more foetus simultaneously).

There are still many mysteries surrounding the exact causes and contributing factors towards an otherwise healthy pregnancy developing into preeclampsia, eclampsia and HELLP syndrome, including theories of genetic incompatibilities, the body rejecting the placenta, etc.  It cannot be prevented as yet, and the only known cure is delivery.  It can however be monitored and in certain scenarios, proper management can prevent it escalating at a rate which is life threatening to mother and/or child.

Statistically, our story, is a rare occurrence. Yet, I’ve met so many incredible women who have experienced the same journey. Some have their children in their arms, some of their children gained wings, some were too terrified to ever try again and some were courageous enough to risk it all again for the chance to have another child.

Charlotte for us is our one and only after our journey. I developed HELLP syndrome in the middle of my emergency caesarean. I had a dialysis machine on standby, waiting to be connected up to me to save my life. My daughter weighed 3 weeks behind in her weight and faced insurmountable odds of surviving and being a healthy active child one day. My husband faced the risk of losing his wife and child, or being faced with the prospect of raising a medically complex child on his own.

Would I do this all again? No. The risks for me are far too great. I do not believe my body could handle it all again. I do not want my daughter to grow up without her mother if I can help it at all. I do not want to run the risk of placing another child through the pain and trauma of a premature birth.

The survivors guilt is one which is immense. I don’t for a second regret fighting to save Charlotte. But I have tremendous amounts of guilt for doing so. It’s hard to explain, and believe me, I’ve tried, on numerous occasions. When we were faced with the recommendation to terminate her and ‘move on and try again in a few months’ I was beyond devastated, for many reasons. The decision to keep fighting for her may have appeared to many people to be a brave one, for others I know it was seen as a selfish choice. And here’s the thing, I can see and sympathise with both sides of the coin.

Charlotte is healthy, for all our issues with feeding aside, she is a perfect stereotypical happy and healthy toddler who has met all her milestones. In many aspects she appears to be well ahead of some of her peers. But not all stories end as ours has. Many children do not survive, or they live with lifelong complications resulting from severe premature birth, from lung issues, hypertension, cerebral palsy, learning disabilities, heart conditions as adults, minor or severe brain damage and metabolic issues. Charlottes story could have led in so many different directions. I have deep admiration for any parent who has a medically complex child, the road is not paved smoothly, particularly when your childs’ medical complexities are possibly not physically visible to the outside world.

Deciding to fight for her, to give her a fighting chance could have resulted in creating lifelong problems for her. I have days where I feel immense pride in making the right decision to fight for her. There are also days where I remember the look on her face, how tiny and helpless she was, lying in her artificial womb incubator, connected up to dozens of life saving equipment and wondering if I haved saved her, for her, or for my own selfish desires. How much of her pain and suffering was justifiable through my actions and decisions?

It’s a complex thought process, and a dangerous one I think. One which could drive a mother to the brink of insanity. I don’t believe though that there is one simple answer, there is no clear cut right or wrong decision. It’s an impossible decision to make, yet we are faced with having to make it. And either way you look at it, and regardless of the outcome, you will always replay that decision over and over in your mind.

Through all of this though, brave mamma’s across the world face these odds head on, taking any number of risks to fall pregnant and carry their children as far to full term as what is humanly possible.