Potty Training

Two months ago we had an evaluation on Charlottes development. While she is no longer technically referred to as a micro preemie, and her age is no longer adjusted to accommodate her early birth, we do still need regular appointments to assess her overall development. With her last assessment over 9 months ago and her third birthday fast approaching we decided it was time to see how she was faring.

We had a checkup with her paediatrician the same time. He checked her out from head to toe, measured her, weighed her, checked her spine, ribs, posture and muscle tone. He asked about her home life, how she was talking, sleeping, eating. And I quietly held my breathe and waited for his verdict. Nerves fraught with tension, waiting for the inevitable concerns that would be listed. Instead he started beaming, told me to breathe and declared that he was so very proud of our little mouse and her progress! He was thrilled actually! Yes, her weight was still nowhere near where it should be, but she was healthy, strong, meeting every milestone ahead of schedule and she was still growing, even hitting the 25th percentile for height!

We got equally brilliant feedback from her OT! She is ahead in development, formulating sentences of a 3 year old (given that technically she was still only 2.5 years in age at the time of the assessment, this was amazing). She is counting to 20 which is double the number that is expected of her. She can recite the ABC song and is recognizing letters of the alphabet in the world around her. She’s phenomenal at memory games and building puzzles with far more pieces than is expected of a child her age. Overall the news was nothing but positive. Yes, she has some muscle tone issues we need to work on, particularly her upper body and arms, but we’re hitting those head on with specific fun activities to tone and enhance her skills and strengths!

There seems to be one benchmark that she’s not hit and nailed head on. The much desired and dreamed of phase of parenting a young and impressionable toddler. Potty training.

It seems that it’s the ultimate noddy badge for parents, a sign that you are well and truly the best and most successful parent in the world. If your tot turns three and still wakes up in a nappy, you as a parent are a terrible failure. Comparisons in parenting are part of the process though aren’t they?! I find myself being asked daily if she is weaned from her nappies. I see the wide eyed stare when I reply with ‘no’. The smug smirk that slowly spreads across a parents face when they proudly declare that their offspring is. The momentary judgement cast upon you as they assess your parenting skills on how quickly you were able to get rid of nappies in your life.

I would like to believe I’ve navigated these interactions relatively smoothly so far. But this topic is going to land me in hot water, soon. I’m going to put my foot in it without effective self restraint at some point.

Charlotte isn’t potty trained, and it’s not for a lack of effort on our part. We’ve tried so many tricks and methods and have come up nappy full. She has taken on a mentor, someone she loves dearly, follows like a hawk, loves to feed and cuddle with. Someone with ultimate patience, adoration and gentle love. Unfortunately her mentor also happens to enjoy pooping on the lawn.

Yep, her mentor is our Labrador, Paris. Not the greatest of mentors I’ll admit. There are many other traits of Paris that I’d love for her to sample, like a voracious appetite and the ability to sleep through any and all noises. But, as we all learn with parenting, our kids do as and when they will, with complete disregard to our own desires for them.

So yes. Our beautiful child is three and still in nappies. But does this affect your life? Does this make us lazy parents? Have we failed in raising her suitably? Are her chances of being a successful adult ruined because she’s still pooping in her nappy? The answer to all is ‘NO’. We’ve learnt from before she was even born that she marches to her own beat. She has never conformed to any yard stick of convention and norms. She does things as and when she feels she is ready. No amount of forcing the issue will change her mind, if anything, it only further discourages her to do something that she will do when she is good and ready.

So if your darling is potty trained and eating with silverware by the age of three, give yourself a pat on the back. But for the love of all the bacon in this world, don’t be a smug ass about this achievement. It doesn’t mean that you are a better parent than others. It simply means that developmentally your precious creation was ready sooner than ours.

So spare a thought for those of us still transitioning, instead of judging us. We literally dream of the morning that we’ll wake up and we don’t have to begrudgingly sort out dirty nappies. We dream of walking down the aisle and not needing to grab a bag of nappies for the trolley. We’ll get there I promise!

Mammas who are still dealing with nappies daily. I see you!!!!

THE NICU EXPERIENCE

The TV series ‘this is us’ recently aired an episode in its latest season where one of the main characters experiences a premature birth at 28 weeks. I’ve not yet been able to watch the episode myself, but I have seen many comments eluding to the fact that it is sadly, wildly inaccurate and does not portray the NICU experience as well as it could have. I can understand though how much of a daunting task this could have been for producers though, so I’ll reserve judgement for when I’ve seen the episode myself.

Thing is though. The NICU is near impossible to describe. Nothing can prepare you for what you experience when you walk in there for the first time. It is terrifying. It’s like bulldozing through a brick wall, in a hazy slow motion, while someone is throwing bricks at you. Blow by blow you keep moving forward one step at a time, you can’t stop, you can’t run for cover, you have no choice but to keep moving forward one step at a time.

Before you even get to see your child for the first time there are ground rules, things to learn, things to do. Learning how to wash your hands, where to leave your phone, what you may and may not wear, what you may not bring in, where you leave your handbag, bottled water, much needed coffee, etc. These are only the beginning and once you’ve navigated your way through washing your hands and ensuring that your clothes are cupboard fresh and not covered in hospital germs, you enter your babies room. Any number of life saving equipment surrounds their incubator, attached to them, keeping them alive. You search in the dark of the incubator for the tiny body that is apparently your baby. When your eyes finally settle on her you are shocked at just how small and fragile she is.

A rare moment when the Giraffe Incubator is open. Charlotte is in there, somewhere.

You are only beginning to comprehend what lies ahead for you and your family. While you are still trying to comprehend what’s happened, your babies nurse gently explains her vitals to you and tries to navigate you through it all. She’s honestly giving you as little information as possible during your first visit. But it feels as though she’s throwing a medical journals worth of information at you in one go. You can hear her, but you can’t really make sense of it all. All you can do is to look at your child. Breaking eye contact is next to impossible, you fear that if you stop looking at them that something will happen to them, that they’ll feel you leaving their side and not want to fight any more. You are trying to hear the nurse, but there are a thousand pieces of equipment humming, pinging and beeping in the background. Just outside the door are more nurses discussing their patients, alarms beep in the background, a radio plays a familiar inappropriately cheerful song in the background. In the corner a mom is reading softly to her baby. You want to ask questions, but your tongue has gone dry. And with every unfamiliar new alarm sounding off suddenly in the background or in your babies room, your heart stops beating, fearing that the alarm is announcing death.

Welcome to the NICU. Your journey is only just beginning. For most babies, their stays will be nothing more than a formality or precaution and a night or two, albeit, these few nights will be understandably terrifying for their parents. For others the stay will be for a few days, perhaps even a week. And for a small percentage, the stay will be months.

It’s a unique world. One that can only be comprehended and understood once you have been unwillingly cast into it. If you were fortunate enough like we were to be part of a small and intimate NICU, you find yourself becoming part of the furniture almost. You sit at your daughters door, confined to her room, her sleeping on your chest finally, or still confined to her incubator, reading out requested nursey rhymes to staff and parents. You share jokes, knit patterns, favourite recipes.

You learn to read the nurses faces in the morning when you arrive, you know when there’s been a new arrival and it’s been touch and go. You learn which paediatrician is on duty, purely from a nurses demeanor when you greet them. You grab coffee for everyone from the staff canteen, you’ve been there so long that people start assuming you are part of the staff content of the hospital. You assist new parents when they are standing by the basin, unable to remember exactly how to wash their hands, terrified that if they do it wrong that they will kill their baby, so they stand there and stare blankly at the basin.

You stare in awe at your baby and wonder when you’ll be able to do more than just hover your hand above her body, her skin so fragile that a simple touch can tear it open. You wonder if she can hear your voice. You are overwhelmed with emotion on the day you walk in and are told you can hold her for the first time. You’ve been yearning to hold her for weeks and the time is finally there. You can’t believe she is yours, how perfectly natural it is to hold her, in spite of the equipment attached to her. And then the shear horror when she is so comfortable that she altogether stops breathing or her heart stops beating while she lies sleeping on your chest. When nurses calmly massage her to get her heart pumping again and when essentially you learn to revive your own child every time it happens again after in the seconds it takes the nurse to get there. You begin to fear that holding her will kill her. You spent weeks aching to hold her but now you are too afraid to do so.

You learn the palour of her skin and the change of her vitals and know that the paediatrican will be asking for you to sign the umpteenth consent form for a blood transfusion. You stare at her first outfit, neatly folded and waiting beside her nappies, where it’s been for weeks, waiting for her to be strong enough, old enough, big enough to wear her first clothes.

You spend your days at your child’s bedside watching new babies arrive and go home before yours. For every two steps closer to taking your baby home, there is a guaranteed step backward as well. You swell with love and pride when you say goodbye to parents taking their babies home, but your heart aches for yourself, you wonder how it feels, and if you will ever feel it for yourself.

You overhear things naturally through your time there. You find out which babies are terminal, inoperable, made miraculous recoveries, gained weight, successfully transitioned onto breast milk, pulled through NEC, came off ventilation, were going to be discharged and so much more.

You go home every single day wondering if that night is going to be the night that you get a call to go back because something bad happened. You lay awake at night, waiting for the phone to ring. You stare at the ceiling and wonder how you will make it through the next day, but somehow you do. You look over at the calendar on the wall and realize you haven’t marked off yet another day in the NICU, 75 and counting you realize. When will it be our turn to bring our baby home???

Going home is the ultimate goal though isn’t it?! And when you are given the date you are thrilled, overjoyed, overwhelmed, and strangely terrified. You realize that you won’t be able to rely on all the equipment to tell you if your baby has stopped breathing or if her heart forgot to carry on beating. That looking after your baby will be on your shoulders only. After months of relying on the help and guidance of an entire medical team of professionals, you’re now responsible to care for a medically fragile infant. Suddenly you’re not so sure you want to go home after all.

Almost wire free and ready to go home.

Life within those walls is something that can rarely, if ever, be adequately put to words. Daily, you or those around you, are faced with scenarios you never imagined possible. There is no time to process what has happened, you live moment to moment, crisis to crisis, victory to victory. You watch the clock and count the days until you can take your baby home. Because when you walk out those doors, your life will pick up where you left it. The truth is though, that for most, life will never be the same again.

The NICU is an experience that changed me for life. I walked out those doors with my daughter as a different person. I’ve only skimmed the waters edge with some of what I personally experienced and what many other parents experience in their time there. Every babies journey is different, but the fear their parents feel when they know their child will be spending an indefinite amount of time there is universally understood by anyone who has worked or spent time there.

On our way home for the first time, after 91 days in the NICU.

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.

 

It takes a village

The role of parent is not an easy one.  We are tasked with so much responsibility.  At the end of each evening I find myself questioning my abilities. I run the entire day through my head.  How I could have done things better.  That my daughter deserves someone far more capable than I.  How I’ll cope with the following days challenges.  Am I allowing her enough freedom, or not enough?  Am I giving her the right skill sets to become independent?  Am I too hard on her? Am I too lenient on her?

We are the caregivers for a future generation. It’s not a role to be taken lightly.  It rests in our hands to raise these little people the right way.  Ensuring that we have given them the right set of skills, in order for them to have the best possible outcome to start a life on their own one day.  We need to ensure that we raise healthy, compassionate, confident, happy and well-developed people.  But raising a child takes more than a parent or two or three doesn’t it?!  It takes a village really.  Family, friends, caregivers, mentors, teachers, tutors, neighbours and even strangers.  We all play a pivotal role in creating successful future generations of functional adults.  As a society in entirety, we are responsible for ensuring that future generations are looked after.

We have shared much of our daughters’ and our story to create awareness for others.  One such story occurred this past week. Charlotte grew very ill, very quickly.  One listen to her lungs by her paediatrician and we were immediately admitted to the isolation ward in paediatrics.  She had contracted pneumonia in both lungs.  Very bad for a former micro preemie with a history of chronic lung disease.  Further tests also confirmed that she had contract ‘RSV’, which was likely the outlying cause of her contracting pneumonia as a secondary infection.  With confirmation of her diagnosis I opted to re-share a prior post I had made in sharing awareness and preventative measures surrounding ‘RSV’.

So many wonderful and amazing members of our village offered love, support and encouragement. Many more shared the post to create further awareness, which in itself is amazing support and love.  And as I wondered through the comments made on various shared posts I noticed a handful of interesting comments.

One comment noted that the poster couldn’t see what the big deal was. It is after all just a common cold, one which all children will have at some point.  She’s not wrong with that statement, but it is a fairly naive and narrow-minded one if I’m honest. Another which struck me hard in the feels was one which stated that as Charlottes’ mother, it was my sole responsibility to ensure that she is protected from germs.  Yes, thank you for pointing out that I failed my daughter.  Let me add however, that while it is indeed my responsibility to protect Charlotte, it is equally your responsibility to prevent the spread of your and your little ones germs.

The comments got me thinking though.  Had the objective of my original post not been clear?  So I went back and read through it a few more times to see what I had missed.  What I noted at the end of the exercise was that I was encouraging nothing more than basic hygiene etiquette from general functional and rational members of society, whom I presume to be capable of logical thought.

A lot of the original post focused on prevention. How to best prevent the spread of this horrible virus. Simple, basic tasks such as:

  • Washing your hands regularly, especially after being in contact with known germs, viruses and bacteria.
  • To cough or sneeze into the small of your elbow or into a tissue to prevent airborne particles.
  • To wipe down surfaces you may touch in public spaces, that others will be in contact with.
  • To teach your children to cough with a hand in front of their mouth.
  • To keep sick children at home as far as possible. Yes, we all know it’s difficult and sometimes impossible. But again, revert back to basic hygiene 101, clean surfaces they come in contact with.
  • By wiping your hands before you pick up a dozen different bags of pasta to see which one floats your boat for dinner.
  • By confining your sick child to a baby wrap, sling or even a trolley instead of allowing them to run amock down all the aisles.
  • By wiping down your trolley when leaving the store.
  • By not taking your sick child to school, childrens parties, play areas and parks or to the local Spur play area on a Friday evening.

None of these are overly complicated and impossible to achieve, and all are  respectful and mindful of the basic hygienic rights of all members of our villages.

So yes, as you so wisely pointed out, as much as it is my responsibility to protect my daughter, it is equally my responsibility to ensure that if she or I are ill, that I prevent the spread of those germs to you. And we expect the same respect, courtesy and effort in return. It is also my responsibility to nurture my daughters development in its entirety, this includes so much more than just her health. It includes her social development with society, her friends, class mates, adults and strangers.  I have to find the right balance between her health and well being to ensure that all aspects of her development are nurtured.  In order for me and for any other parent to fulfil this task successfully we need to work together to ensure that we are offering all of our children, safe environments in which to develop.

So while my daughter remains highly contagious for the next few weeks you will likely see very little of me out and about. But, if you do happen to see a crazy lady with a pile of sanitizing wipes in the store, frantically wiping down her hands, trolley, milk bottles, blocks of cheese and bags of pasta, wave your own sanitizing wipe in my direction and say hi!

You are the people who I want in our village!

If you would like to read up more on RSV please do click on the link below:

https://www.facebook.com/RaisingCharlottePE/photos/a.1688358448096619.1073741827.1688213771444420/2010252569240537/?type=3&theater

Much love from the hand sanitizer queen to all of you!!!

 

 

She is not viable

She’s not viable….

When Charlotte is soundly and snuggly asleep in bed between Johan and I, we often marvel at the wonder that is our daughter. She is perfect. She is beautiful.  She is mesmerising in every aspect of her being.  I cannot imagine a world in which she does not exist. I cannot fathom a life that does not include her larger than life personality.

 

And yet, this was a cold, hard reality with which we were hit with when I was 23 weeks pregnant.

I remember every aspect of that moment.  The feel of the sheets against my skin as I lay in a bed not mine, in a room with two complete strangers whom I’d listened to all day, hidden behind their cubicle curtains, talking to loved ones, talking about their beautiful new babies.  The heat of of a room where the aircon wasn’t working, the warm sun baking through the curtains, the sound of construction work outside my window, the dull background noise of nursing staff tending to their new mommies and new little people in the nursery down the corridor.  The telephone ringing at the reception desk.  The excited chatter of family come to visit loved one and celebrate the miracle of new little lives born that day. The smell of sanitizer hanging in the air. Newborns crying in the nursery as they receive their first bath.

A week before we were swaddled in ignorant pregnancy bliss. A week before, my husband and I had seen Charlotte at our 22 week ultrasound. It’s the all critical ultrasound, organs are checked, limbs, fingers, toes, brain matter, heart function, blood flow, artery and vein formations and supply, weight is checked, head circumference, the results of our Down Syndrome risks. As I lay there and we watched our perfect little girl on the monitor we allowed ourselves to finally breathe, she was well, she was healthy. She was perfect.  Our doctor was thrilled with her progress and development.

24 hours later it all changed. I was admitted the day after our scan. After tests and a night of observation I was diagnosed with early onset pre-eclampsia.  I’d read briefly about in in my pregnancy book. I knew that the only method to stop it from progressing was delivery. But I never in a million years thought that we would be that one in a million pregnancy that would result in a delivery that would see a child born into this world at the very start of the third trimester.

A week of staying in hospital and feeling reasonably healthy went by, while my blood pressure refused to stabilise I still felt well enough to believe that this was all somehow a huge misunderstanding, that soon we’d we sent home to enjoy our last few months of pregnancy bliss. And so I lay in wait that fateful day, with baited breath.  For my doctor to arrive and tell me what our game plan was to prevent my illness from progressing. What we’d be doing to keep Charlotte inside, growing and healthy. To tell me that all would be OK, as it was just a week previously.

When I heard my doctors voice in the corridor, the light laughter shared with the nursing staff at reception, I allowed myself to believe that all as going to be OK. Nobody is capable of sharing light-hearted laughter mere moments before delivering bad news surely? My halo of hope shattered the moment that my doctor walked into my room and towards my bed. I could see it in the walk, the eyes and in the way I was greeted. It was over.

The world went quieter and quieter as our one sided conversation progressed and my diagnosis was being explained. I didn’t contribute much, I sat and listened, trying to comprehend what was happening, until those words brutal were uttered.

‘She is not viable’

I was given a breakdown of her viability from a legal and medical point of view. I was given statistics on survival rates. The probability that in the certain event that she were to be born soon that she would likely suffer from lifelong debilitating complications. In my doctors’ eyes, I no longer had a viable pregnancy, or a child worth saving.  Our baby that was doing so well a week ago was suddenly no longer worthy of this world or my doctors’ time. She wasn’t viable.

I was advised that the best course of action would be termination, in the best interest of my own health.  She wasn’t a cause for concern any longer.  With a final look down towards me of pity I was told that my doctor would be away for a while on a business trip for two weeks and that it was doubtful that I would still be pregnant on return, I was wished the best of luck on my decision and for the weeks ahead and I was left to digest what I was just told and to make an impossible decision with my husband, my childs father.

Behind a curtain on the opposite side of the room was a new mom who wept with me. We hadn’t even laid eyes on each other and yet I was receiving far more compassion from this woman than I’d received from my own doctor.  She made me promise not to give up. She made me swear that I would continue fighting and looking for help.  She selflessly gave me the hope that I needed, in spite of her own birthing trauma and firstborn lying in the NICU.

I remember feeling so very alone, in a room full of patients and nursing staff. I remember feeling the feint movements of my daughter inside my stomach, alive and fighting, nobody fighting for her any longer.  She wasn’t viable?  She wasn’t worthy?  She wasn’t a living being worthy of having time spent on her any longer?

I remember the fear.  A thousand variations of crippling fear.  What if I was being selfish to fight and she died in pain?  What if I fought and she was born with severe compilations and lifelong issues.  What if I fought and I died, leaving her without a mother, leaving my husband with a child who required constant care because of my own selfishness. What if I agreed to termination?  Would I be able to live with the guilt of ending my perfect daughters’ life to save my own?  ‘What if’, a thousand of them. That voice behind the curtain encouraged me not to give in, to hold out hope until my husband was able to get there and until we were able to get a second opinion.

‘She is not viable’  I’ll never forget those words for as long as I live and breath on this earth.

And yet here she is.  Strong, beautiful, breath-taking in her determination and presence.

We were given hope the following morning.  She was viable to someone. Someone believed in my determination. Someone believed that she was worthy of fighting for. Someone knew that she deserved to be given a chance to be a part of this beautiful world.  Someone believed that she would be ok, healthy and happy. For that belief I’ll never be able to repay or express my gratitude enough.

As I lay beside her, watching her take in those tiny gentle breaths while she dreams of conquering the world I remember that we are guaranteed nothing in this world.  Nobody is going to fight for us if we don’t fight for it ourselves as well.

I know that we did right, that we fought bravely and selflessly for her.  I know that while I came dangerously close to losing my own life, that it was worth the risk, to have her a part of this world. Every day she shines fresh, beautiful light into this world. Every day is a blessing and an honour to know that someone else believed in her, in us. That she was worthy.

She was viable.

She was worthy.

She is perfection.

She is our world. She is viable. She is worthy and she is pure perfection!