Essential Baby member Kirrily with her husband and two daughters.
My first diary entry after losing Ellanor
June 21, 2004
I gave birth to a pixie-girl. My Ella was very elfin-like.
With her woollen hats, she was Snugglepot. Cuddlepie. An angel. An elf. A pixie. Beautiful. Interesting. So interesting. So much going on behind her eyes and on her face. Huge eyes. Expressive eyes. And so inquisitive.
Ella physically died. She went back. I really feel she only ever meant to visit for a little while. We never made future plans, before or after her birth. I don’t know “where to” from here. I feel humbled by the universe, by Mother Nature and how I can plan and dream all the hell I like... it makes not a lick of difference.
So we’re back to where we began, so to speak; just the two of us. Me and Steve. We’re as solid as a rock.
I wait. I get on with life as best I know how now.
My name is Kirrily. I’m married to a guy called Steve. This year we celebrated our tenth wedding anniversary. We have spent six of those years trying to conceive our first take-home baby.
Most people have never actually met a couple like us. We are those proverbial “friends of friends of a guy whose cousin worked with someone once whose baby died”. We have also conceived more babies than many couples do in their entire lives. Ours is one of those word of mouth stories, the kind I heard on someone else’s grapevine and hardly believed, let alone contemplated. But in 2000, I began to find out for myself.
This first miscarriage shattered me
Our first loss was in April 2000. A missed miscarriage at 12½ weeks that required a D&C to remove the contents of conception. “Contents” that I had seen on an ultrasound screen, lifeless, just hours earlier. This first miscarriage shattered me, more than I allowed myself to admit. Steve was also deeply affected. So unravelled were we at the prospect of another failed pregnancy that we avoided any chance for over 18 months. But we headed into 2002 with renewed hope and dreams of this time “getting it right”.
It didn’t happen. Not quite as easily as we had hoped anyway. As soon as we actively tried to conceive again, I fell pregnant – and lost the baby at around five weeks. The following cycle we endured another miscarriage at the same gestation. A rising sense of dread led me to investigate the cause. I was quite surprised to hear they wanted to test Steve too. I was so sure it must all be my fault.
We had a four in six chance of miscarriage
The results came in – mine were clear, but it was revealed that Steve carries a balanced translocation (swap) of two chromosomes, 11 and 22. With this factor, we had a four in six chance of miscarriage, but any one of our naturally conceived pregnancies might be fine. It was pure chance, or so it seemed. We were determined to challenge these grim, sobering odds. Before 2002 ended, I experienced another very painful miscarriage at seven weeks. Nine months passed before I could get pregnant again, despite our trying exhaustively. It felt hopeless.
Even though we had a known factor for these losses, I continued to strive for anything that would make me the healthiest I could be. I turned to Homoeopathy, as a holistic way to recoup my battered body and hormones, something which gave me a sense of wellbeing and calm. I had spent almost all my adult life to date falling pregnant, or getting over a pregnancy (as if it were an illness). Yet our home and hearts were still waiting to expand to let in just one special child. I gave up my ideal of three children. I begged the Big Whatever for “just one”. And then suddenly, in mid-2003, in slipped this little being who would change our lives forever.
I began to have contractions after my waters broke without warning
Ellanor Ruby, I discovered as she grew in my belly, was a soul who was larger than life and stronger than her fragile baby body. I had an amazing connection with her, one I had never experienced or believed could happen. I discovered, long before she was conceived, that I could actually hear her. Even have short conversations with her. This alone led me to believe she was more than safe and coming to join our lives for a very long time.
On January 12, 2004, just over ten weeks before she was due, I began to have contractions after my waters broke without warning. There was no time to panic and no room for alarm or fear. Ella was coming. After ten hours and two pushes, all of a sudden, here she was. All 1.58kg of her. Ellanor was placed on my chest for the briefest of moments. Steve had the camera ready and took two glorious photos.
“Hello,” was all I said to her softly. “You’re here.”
We spent a month in the NICU with our baby. A long, blissful and frightening rollercoaster ride. When she was two weeks old, we were informed that Ellanor had a fairly uncommon heart defect known as a “truncus arteriosis”. Ellanor only had one outflow tract, a shared aorta, with a hole in her heart and a leaky valve. The prognosis was not without hope, but it was pretty grim. Surgery was scheduled for a later date.
She was showing signs of being generally unwell
Despite these threats to Ella’s life, it was a deadly illness called necrotising enterocolitis (NEC – A viral infection causing death of the bowel tissue) that claimed her, suddenly and without warning. She was showing signs of being generally unwell in the morning and by that afternoon, she was gone.
The hole Ellanor left in our lives was gaping, something so seemingly insurmountable that a return to who we once were seemed entirely out of the question. We grieved our daughter. We grieved the lives we formerly knew. From now on, the game would change completely. Had I not lived it myself, I would not have dreamed it possible to continue, to laugh again, to joke, to enjoy anything. But I started out with very simple things that gently nurtured me back to a sense of wellbeing: a sunny day, a good coffee, a hug of my dog.
Steve wore a stoic face and carried a heavy heart. His was a more silent defence against insensitivity to his empty arms. We were whipped into a new world we never dreamed existed – that of childless parents. I began asking questions of the Universe. My days now achingly free to ponder, I questioned everything:
Why had she been born with an imperfect heart? Why was she chromosomally perfectly healthy? How could the only baby who had made it through the “chromosome maze”, and been so perfect in every other way, be taken by an infection? Were we doomed?
We attempted IVF with Preimplantation Genetic Diagnosis (PGD)
As our desire to bear a healthy child grew in intensity, the reality of it ever happening slipped further away. Putting our options on the table, we seriously considered foster care. In 2005, we attempted IVF with Preimplantation Genetic Diagnosis (PGD) and hoped fervently that this would be our saviour. It wasn’t.
The experience of losing Ella helped immeasurably in giving Steve and me the resolve to open our hearts and just accept what was. We were an infertile couple. We were possibly destined now to live a childless life. The day I saw yet another two lines appear on a home pregnancy test, I had only just recovered from a chemical IVF pregnancy, achieved during our second (final) attempt. This threw up a whole new world of concerns – never before had I been pregnant naturally while under the influence of the residual IVF drugs. I hadn’t wanted it to be this way.
If there was one thing I had learned from having Ellanor, it was that I must both trust and be in touch with my own rhythms and intuition with regard to my body. My plans for detoxing were dashed. Yet again, I had to give away control of the process and allow my body to be guided by some as yet sight unseen little being. I had almost forgotten how to reach my thoughts much further out, to this baby who was hopefully sauntering on in, and stay focused on it rather than anything going on for me physically or medically.
Steve did his best to guide me through my fears
This “little being” became the brightly shining light of our second daughter, nicknamed "Lolly". By the time I was 26 weeks pregnant, I had to face that we were going to be welcoming another baby girl. I was silently petrified, an enormous well of mixed emotions. Steve did his best to guide me through my fears that we would betray Ella if we loved Lolly more, but moreso my pre-emptive resignation that we could not possibly love her nearly as much. Our focus had been just on the three of us for over two years and it felt weird to be making it four. We wanted this to happen but realised as we edged closer that it was going to be hellish and hard.
Our second daughter's birth names mean “A place of honour” and “Reborn”. Despite a dangerous entry into our arms via a precarious birth, she has from the outset been a calming, steadying salve for us, wise beyond her years with a knowing look.
I believe these special babies always carry a little extra special “something”, for their task is so huge when following the death of an older sibling they will never meet.
Now three years down the track, with every corner of our lives filled with our "Lolly", it seems impossible to think what our lives might be like without her – indeed, without either of our two most precious little graces. And all the while, Ellanor grows alongside us.
As we evolve as a family of four, so too does the memory and legacy of our very special angel.
Essential Baby member and author Kirrily is currently in the final editing stages of writing the book of their journey. For more information or if you would like to be updated as to its progress, please email her at - book@erwdesign.com.au or visit www.geneticfactor.com
Article compiled by Nicole Salinas. Read more Essential Baby Feature Member articles here.
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