Heart Wrenching: Facing the impossible – Forced to ‘play God’…
South African expat HAYLEY REICHERT bares her heart and soul in this raw and honest account of the loss of her beloved baby, Alexis Rae… commemorating Baby Loss Awareness Week 9 – 15 October 2017
My mind crashed about like a ship in a bad storm for six long weeks, writes well known South African expat, based in London, Hayley Reichert…
How on earth could anyone expect us to do that? How could we voluntarily poison and kill this child growing and kicking inside me? How would we live with ourselves? Do we have the right to ‘play God’ and end this life? How would other people be towards us? Would we have any friends left after they find out what we’ve done? How could we even be considering this option – does this make me us bad people? How could we survive with a severely disabled child, possibly even one who is a ’complete vegetable’? Would we be saving our child from a lifetime of pain and suffering? Would we be selfish for doing this or would it be more selfish to cause huge implications on our other 2 children? What if we make the wrong decision and spend the rest of our lives wondering if she would have only had mild brain damage that would’ve been tough, but manageable? What if we go ahead with the pregnancy and bring pain and suffering to this child, our other 2 children, our friends and family, each other and ourselves?
It was deafening. It was consuming.
This is our story and the harsh reality of any parent being forced to ‘play God’. Regardless of whether or not you are pro-life and/or very religious, the words you read here may cause you to feel uncomfortable and possibly even invoke a range of negative feelings towards us.
And that’s ok, you see, because we don’t expect you to understand what we’ve gone through. We don’t expect you to agree with our decision.
We do however hope that you will remember this story should you ever find yourself needing to be there for a friend going through something similar.
Two days before we were due to fly to South Africa for a family holiday, our world was shattered.
Two days before we were due to fly to South Africa for a family holiday, our world was shattered. We were told ‘it’s not good news’ following a detailed brain scan of our unborn daughter.
The day of our flight we had a 2nd opinion scan during which we were told the exact same words. We made it to check-in at Heathrow with 15 minutes to spare and not a clue how we would fake happy faces for the next 3 weeks and hide my very obvious belly as we hadn’t yet publically announced my pregnancy and now, given the uncertain future we faced, we didn’t want to. I was 17 weeks pregnant.
The doctors tried their best to ‘soften the blow’ as they explained that our baby had severe ventriculomegaly (swollen ventricles) that were filling with cerebrospinal fluid (hydrocephalus).
This was due to a blockage preventing the fluid from draining into the spinal cord. Her head was measuring 2 weeks ahead of what it should’ve been. I drove home in tears and cried solidly for the 2 days before our trip.
All work went out the window and trying to pack seemed like an impossible task.
To explain the diagnosis: Normal lateral ventricles in the brain of a foetus of this gestation should be less than 10mm diameter. Anything between 10mm-15mm is mild to moderate whilst anything over 15mm is classed as severe.
At both scans before our SA trip, the ventricles measured 13mm and 15mm. They said we were looking at a minimum of 30% permanent brain damage but it could be as high as 100%. And we wouldn’t know which parts of the brain are affected until after birth. There is also nothing that can be done in utero. We knew we were facing the possibility of bringing a severely disabled child into this world.
The doctors gave us two options: Continue with the pregnancy or terminate.
Tensions were high between us on our holiday. We didn’t know what to say to each other as we tried to make sense of this impossible decision that lay before us.
Whilst social media tells a tale of an incredible family holiday, the reality is that we were dreading as each day passed, knowing that it meant we were one day closer to deciding the fate of our daughter.
Before we flew, our consultant explained that upon our return, should we choose to terminate the pregnancy, there would be a ‘little extra step’ involved as I would be over 20 weeks.
This ‘extra little step’ was the biggest mind-fuck I have ever experienced. Due to the higher survival rate of a baby born after 20 weeks gestation, our little girl would need to be clinically dead before they induced labour.
I would be expected to lie very still on the bed whilst a large needle is inserted through my belly into our baby’s heart.
I would be expected to lie very still on the bed whilst a large needle is inserted through my belly into our baby’s heart. They would anaethetise her and inject potassium chloride to cause cardiac arrest and stop her heartbeat.
I simply couldn’t get my head around this.
I couldn’t possibly lie still and would surely need sedating but that wasn’t an option. There was no way I could live with myself for the rest of my life knowing I had voluntarily killed my daughter.
Upon our return, another scan at 20 weeks revealed the ventricles were both 17mm. ‘Ok, that’s not too bad, it’s only 2 mm in 3 weeks, we can do this’, I thought to myself, ‘there’s no way in hell I can even genuinely contemplate the option of terminating – it goes against every moral fibre in my being’.
I tossed like a yo-yo between my two only options, wishing someone would tell me what to do but everywhere I turned I was met with the most uncomforting, confusing words ‘there’s no right or wrong, only you can decide’. My gut niggled, I listened.
I opted for an amniocentesis and virology test (to see if the cause was genetic or from a viral infection), even though deep down I knew it was neither. I had to wait 2-3 weeks for the full set of results to come back.
I was so conflicted with the thought of prolonging the decision whilst bonding with her even more as she was becoming more active in my tummy. I opted to also have a foetal MRI. There was no further testing available. I had to wait a further 5 days for that report.
My birthday was Monday 4 September. It was a shitty day.
I had spent the 3 weeks since coming back from SA in a deep, dark depression. I could barely function enough to keep my other two children alive and do some basic housework – everything else was just too much effort.
I knew that I would get that dreaded phone call the next day with the final results and either way, I knew we had to make a decision and act on it there and then. I knew I couldn’t continue like this.
Deep down I knew that if the result had increased to more than 20mm, my decision was already made – I felt confused that I was even allowing myself to entertain the thought of ending her life.
Dave & I discussed and agreed on each of the two possible outcomes once again and he too felt that if the measurement had increased significantly that it would not be fair on our daughter to continue.
I hoped for the best.
The next morning, my phone rang. Again I heard the words ‘it’s not good news’. My heart shattered. In just 2 weeks it had increased from 17mm to 25mm. It was as if I then went into robotic mode, as if I wasn’t in control of what I was saying.
I knew, that by making that decision, I had to remain strong for at least a further 2 weeks due to other commitments and my eldest child’s birthday. Only after that could I allow myself to fall apart.
By the late afternoon everything was confirmed. Wednesday 6 September 2017 would be the day I ended my unborn child’s life. Dave asked me ‘are we doing the right thing?’ I replied saying I had no idea but I had to go with my gut feeling because there was no textbook to give me an answer.
I told her how sorry I was
That night I cried hard. Whilst I’m not exactly religious, I prayed. I spoke to her and felt her kicking. I told her how sorry I was and how I hope she knew that we weren’t doing this selfishly. The swelling would only get worse, which means her brain would not be able to develop properly and there is nothing that can be done in utero.
My gut has never been wrong when it comes to my children…
Although I don’t have anything ‘factual’ to base this on, my gut feel is that she would’ve had a minimum of 65-70% permanent brain damage and a very poor quality of life. My gut has never been wrong when it comes to my children and I will spend the rest of my life hoping and praying I wasn’t wrong on this either.
I prayed to God and the universe that I would wake up and feel a strong sense of calm and peace the next morning. Of course, at the time you never actually think that being calm under such circumstances is even possible but somehow you hope like hell, anyway.
The next morning arrived far too soon. The only word that comes to mind about how I felt, is ‘subdued’ but not in a negative sense of the word. I had made peace with my decision. I was not second-guessing myself nor was I anxious.
I knew then that this was the ‘right’ decision.
I was strangely and overwhelmingly calm
I was strangely and overwhelmingly calm and collected. If I had woken feeling extremely anxious and uncomfortable, I knew I would’ve been about to make the biggest mistake of my life and I would have continued with the pregnancy.
I did not cry that day. I lay on the bed, saw the consultant measure one of her ventricles had increased from 25mm to 26.3mm in 5 days. Dave heard her say our baby’s head was measuring 4 weeks larger than what it should be.
I watched her heartbeat slowing down
I watched her heartbeat slowing down within seconds of the injection being administered. I turned to Dave who was crying next to me and by the time I turned my head back towards the screen, she was gone.
I had faced the most psychologically challenging part of this journey but I felt numb.
Now I had to face the physical part. For Dave, this was a hard one as all he could do was watch me go through the pain when all he wanted to do was share the burden. I was induced on Wednesday 7 September.
I never want to experience an induced labour ever again. After 2 natural births, the 2nd with zero pain relief , I know what my pain threshold is. The meds kicked in at 4.30pm and the mild backache grew to severe backache by 8.30pm.
At 9pm I was starting to really feel the contractions, and that’s when things went pear-shaped. I had a horrible dizzy and vomiting spell. My blood pressure crashed . The nurses couldn’t stabilize me as they couldn’t get the drip to stay in either arm, which means they couldn’t give me any other pain relief except gas & air. I was in excruciating agony to the point where I couldn’t move my body or lift my head.
Eventually the nurse shoved the gas & air into my mouth which helped a little. Nearly an hour later, I finally felt her little body ‘pushing down’.
She was beautiful.
At 10.17pm she was born. Still born. She was perfectly intact in her amniotic sac. She was beautiful. She weighed 745g and was 32cm in length at 24 weeks and 6 days gestation. My body went into shock and started convulsing but I couldn’t care less. I stared in complete and utter awe whilst my brain tried to work out how to deal with experiencing every possible emotion simultaneously.
Eventually my body stopped shaking, the nurse broke the sac and again I stared, wanting to take in every inch of her tiny, curled up little body. We held her and kissed her and loved her and cried. In every other way she was perfectly formed.
After some time the nurse brought in a beautiful little white dress and pink knitted cardigan to dress her in. There was even a silk little nappy. Just like doll’s clothes. Knowing I didn’t have any tiny prem baby clothes nor the chance or the will-power to go buy any, I was grateful for this. We wrapped her in a green blanket that both her older siblings had used.
We were grateful for the memory box provided by 4Louis. We are grateful for the wonderful staff members who were on duty that night and I am so incredibly grateful for a few mom-friends who helped me get through this, for lending your non-judgemental ears and for just listening and letting me talk about this, for those of you who had walked this path before us, for sharing your stories and advice, you know who you are.
The hospital Chaplain who came to see us the following morning, prayed a blessing over Alexis Rae and arranged her cremation and ceremony. Saying goodbye to our daughter in the hospital just 14 hours after she was born was, for me, the most difficult part.
I held her tight and made a simple promise to ‘dig deeper, fight harder’ in all that I do for the rest of my life. Physically you just want to hang on but mentally you know you have to let go. It is a surreal moment walking out of the hospital empty handed and with heavy hearts.
Two weeks to the hour that her heart stopped beating, we said our final goodbye in a private cremation ceremony with our children and the chaplain. We changed our minds and opted not to proceed with a post-mortem because my gut feel all along was confirmed by the MRI report.
It implies that there was that it was a structural deformity that had caused a blockage in an extremely tiny part of her brain, the cerebral aqueduct, which is where the 3rd ventricle flows into the 4th. They couldn’t identify the aqueduct as it wasn’t dilated and the 4th ventricle was small which means little to no fluid was able to pass through. We felt that a post-mortem wouldn’t give us any new information.
It would also drag things out for up to 8 weeks longer plus the thought of her body being dissected would have added to our grief.
Since the moment she was born, we continue to face the third, final and longest phase of this journey, one that will last until we too leave this world. We have cried enough tears to fill an ocean.
We will face dark moments of doubt
We know that these psychological torture and emotional pain will continue to ebb and flow. We will face dark moments of doubt, we will miss not having her in our arms or hearing the sound of her voice or seeing her smile or watching her grow…
Was our baby unwanted? Absolutely not! She was wanted, and loved, and always will be. You may be quick to judge and say we killed our baby and think of us as selfish, horrible people but unless you’ve walked this path, you simply cannot comprehend how much we struggled with this. And how much we always will.
But our love for her meant preventing her from a life of pain & suffering. Our love for her exceeded our need to have her in our arms. And our love for her is as eternal as the universe itself.
As I said in the beginning, some of you may feel a range of emotions from anger to disgust to sadness. We don’t expect all of you to understand or agree with our decision. And that’s ok because, you see, this is our journey to walk, not yours.
What we do however expect is that you do not judge us, or anyone else you may know who is forced to face this perplexing situation.
Please don’t feel awkward or afraid to ask us how we are doing or to talk to us about our journey and our daughter. It’s important to remember that we want to continue to include her in our lives and we want for people to remember her, just as they would if she were here with us in the flesh.
Please don’t avoid us, or act annoyed when we want to talk about her. Please don’t make any reference about ‘getting over it’ because for you it only takes a few minutes to listen to us, but for us it is the rest of our lives that we live without our child.
For us, and others like us who have lost babies at any stage of pregnancy, they are and always will be our children.
Love is unconditional.
A parent and child are bound together forever. Any parent knows they never want to see their child in pain. Parents wish they could take away any form of hurt and take it upon themselves to suffer instead.
A parent’s love for their child is powerful beyond measure, and even death.
#pregnancyandinfantloss #pailawareness #1in4