Celia from The IVF Survivor Shares Her Heartbreaking Journey Through Infertility, IVF, and Pregnancy Loss

Celia from The IVF Survivor

“When I landed at the airport, rob was there to meet me. Then he told me the news that little niko didn’t make it, he’d joined his darling brother spike in heaven. I fell apart - my knees buckling beneath me. I got there too late. I never too to see my sons alive. The following days are almost too harrowing to write about; a blur of desperation and agony.”

- Celia

Our Darling Sons

My husband and I married in November 2014.  By December I’d had my first miscarriage.  I’d like to tell you things got easier after that but unfortunately for us they really, really didn’t.  On the road to parenthood, all my worst fears were realised.

I was 33 when Rob and I married and was lucky enough to fall pregnant almost immediately after our wedding.  Shocked at how easy it had been for me and thrilled, because we’d both always wanted to be parents, our pregnancy was a dream come true.  Sadly, a few days before Christmas, I started to bleed very heavily.  I knew the pregnancy wasn’t ok and the doctors told me that I’d miscarried.  

On New Years Day I suddenly found myself in crippling pain; the left side of my uterus was so agonising I could barely stand or even speak.  My husband rushed me to hospital and there I was told that in fact the pregnancy was an undetected ectopic pregnancy in my left fallopian tube.  I was rushed into surgery to remove the 9 week old pregnancy and the fallopian tube and was told I had a 40% chance of not surviving surgery.  Needless to say the experience was harrowing; it was a tragic start to our marriage and a pretty heartbreaking way to start the year.

Thankfully I survived surgery but I was still anxious about having another ectopic pregnancy.  After speaking to a nurse at the hospital, I was told  the chance of a repeat performance was “very unlikely...only 7%”.  We were told we could start trying again come mid March.  

 By March I was ready.  I had grieved and, as much as I ever will, somehow come to terms with what had happened.  And being able to focus on getting pregnant again - ‘getting pregnancy back’ - I was fuelled by hope.  When we were able to start trying again I had read every ‘How To Get Pregnant’ book I could find.  I was mapping my basal body temperature, I was having acupuncture, I was taking conception vitamins, I was peeing on ovulation sticks for at least half the month.  You name it, I was doing it.  And around ovulation time each month Rob and I were furiously bonking, desperate to get pregnant again.  

Anyone who has lost a pregnancy knows that with that loss comes a desperation to get that pregnancy back and, in my experience, it feels like nothing you can eat, nothing you can drink, nothing you can buy, no joy you can experience will ever replace that missing pregnancy.  It seems the only thing that might make it ok is being pregnant again.  So for four months we frantically tried…and got absolutely nowhere.  

At the end of those four months I made an appointment with my doctor.  I was deeply upset about what had happened at the start of the year and needed support.  The doctor was very supportive and suggested I make an appointment with a fertility specialist to discuss our circumstances further, given my desperation.  I suppose I needed to put my mind at rest but also I wasn’t convinced by the prognosis I had been given earlier in the year at hospital. 

In June 2015 we saw a private fertility specialist where we had several fertility tests done and both of us came back top of the class.  Our specialist diagnosed 'unexplained infertility' and suggested we try IVF.  At this point, the truth is, we were simply desperate to get pregnant so we decided to cut our losses and go ahead with the treatment. 

For us, starting IVF wasn’t depressing but the start of an exciting new chapter where we were certain I was finally going to get pregnant and have a baby.  We were so optimistic and, following our preliminary appointment with our consultant and the excellent results to all the fertility tests, we really felt that we were perfect candidates.  Of course, we’d have no problems and very soon I’d be pregnant!

Sadly our first round of IVF was unsuccessful. I started to bleed only a few days after the embryo transfer.  Even though it was only our first round of IVF, the loss was heartbreaking.  We had such high hopes and the crash in our expectations was the first wake up call; maybe it wasn’t going to be so easy after all. Our second round of IVF resulted in another ectopic pregnancy, removed along with my remaining fallopian tube at five weeks.  Another loss and with it the possibility of me ever conceiving naturally but we couldn’t bring ourselves to stop trying.  We were so desperate to have our baby.  

The following four rounds of IVF were a minefield of extra tests and procedures, all promising our miracle baby. Miscarriage after miscarriage left us both utterly heartbroken and defeated.  And then one morning I woke up and said “Enough”.  The six weeks prior to said morning I’d been on a cocktail of different hormones, all in an attempt for our consultant to deduce when the perfect time for an embryo transfer actually was.  Our consultant asked me to continue taking the hormones for another six weeks but by then, aside from feeling mentally exhausted, I was physically bruised, bloated and miserable; my body no longer seemed to be my own.  

“my body no longer seemed to be my own”

The previous five appointments at our fertility clinic I’d left feeling deflated, having received more and more bad news about my uterus. So after declaring “enough!” I booked an appointment with a non-fertility related Sonographer.  There I was diagnosed with severe Adenomyosis (in essence, a damaged an inhospitable uterus).  The game was up: I would never be able to carry a pregnancy.

 After all our endeavours we reached a dead end.  I was devastated.  For as long as I can remember, all I’ve ever wanted to be is a Mummy.  I know that doesn’t sound particularly feminist and of course I have other dreams but my husband and I are so in love - all we want to do is mix our love together and create a little life.  It’s so easy for other people and so hard for us and, faced with our hardships, I know that many would expect us to stop trying.  Perhaps we’re mad but we felt we were fighting a war and weren’t prepared to put down our weapons until the war was won. Immersed in this feeling of determination and desperation we looked into surrogacy clinics abroad.  We had inherited some money and begged and borrowed some more and every penny we earned we just wanted to spend on trying to have our baby.  So in August 2017 I flew to an amazing fertility clinic abroad and had my seventh round of IVF.  An egg collection which would create embryos for an amazing surrogate’s womb.  We signed a contract with the clinic and they promised to keep trying until we had our miracle baby.

Later that month we received the incredible news that our surrogate was pregnant and at our 6 week scan we found out we were pregnant with twins. In November, at our 17 week scan, we found out both our babies were boys. The pregnancy was absolutely healthy, our surrogate doing fine. At 20 weeks we found out one of our boys had Down’s Syndrome but receiving the news we felt almost more blessed; our boy would have a twin brother to help him out and parenting the alternative way felt like a challenge we were willing to face; our lives had even more purpose now somehow.  Those blissful weeks of pregnancy our world opened up. Finally we would be joining the ‘parent club’. Finally we might be able to get off the baby making train and move forward with our lives. I sent out baby shower invites, bought baby clothes and got to work on our nursery.

 Us in Ukraine at the start of our surrogacy journey

Us in Ukraine at the start of our surrogacy journey

On the 6th January 2018 we received the worst news imaginable. Our surrogate had gone into early labour and given birth to our sons at 23 1/2 weeks. Our little boy Spike had lived for only four hours. Niko, our son with Down’s Syndrome, was fighting for his life in intensive care. It’s difficult to put into words how horrific it is to receive news like this. For us, this news was like a bombshell; a full stop in time where life will forever be divided between the time before and the time after. Nothing would or will ever be the same again. Every photo from the time before, every moment remembered from the time before, will be a time of innocence; our hearts still whole.  

We were watching a film when we received the news. I think it was Sunday night. What happened is a blur and all I can remember as I write this is utter, agonising pain and sadness. A complete obliteration of sorts; those awful words ringing in our ears, deafening us to anything else. And then autopilot. My husband booked flights for him and his incredible father, who agreed to get on a plane and travel straight to our clinic.  In order to release Spike’s body, by law, I needed to get an affidavit testifying that I was, am, his legal mother. I was paralysed with shock for a day I think. The timing is a blur. Then my Mum came over and somehow I managed to get an appointment with a lawyer, swear the affidavit, have the oath notarised, pack my bags, pack Niko’s baby bags…. I can’t remember when I flew out. Rob had managed to see Niko in intensive care. The hospital had not allowed it, thinking he was a stranger but by some miracle he’d run into our surrogate who, in tears, fought with the doctors to allow him onto the ward. Rob held Niko’s little hand, his precious little body attached to wires and swaddled in blankets. Rob said he flapped his little hand, as if he was waving. A moment I missed and I will always be heartbroken because I missed it.

When I landed at the airport, Rob was there to meet me. Then he told me the news that little Niko didn’t make it; he’d joined his darling brother Spike in Heaven. I fell apart - my knees buckling beneath me. I got there too late. I never got to see my sons alive.  The following days are almost too harrowing to write about; a blur of desperation and agony.  

We had our sons cremated so we could bring them back home to London with us and before that we saw them in their open caskets, swaddled in muslin blankets, at peace.  Just a few agonising moments to look at our precious angels in their little blue coffins. I never got to hold them or kiss them. It’s a pain too unbearable to think about. In the UK perhaps we would have been able to hold our babies, take pictures, maybe even get to take imprints of their little hands and feet.  Our situation was stark, rudderless, uncushioned - though in truth the loss of a baby is an inconsolable agony in any environment.

I’ll never forget the overwhelming love you experience when you first see your baby.  For us it was the greatest love of all mixed with a grief beyond all imagination - the greatest pain of all.  I’d like to share the pictures of them but they are somehow to sacred, too heartbreaking to be seen.  I find it hard to look at them myself but perhaps with time I’ll feel able to. I have cropped little motifs from their baby blankets which I framed by my bedside.  I look at these little motifs and it reminds me of our darling sons.

I don’t know how we survived the following days, weeks, months. We were surrounded by the love of our families and friends but clung to each other like a life raft; somehow managing to exist despite the sudden emptiness of our world.

It’s hard write more about this time in our lives. It’s too painful. Writing this I need to walk away just to breathe. To remember a world where I’m not suffocating with heartbreak.

“To remember a world where I’m not suffocating with heartbreak.”

Our little boys’ urns sit, surrounded by their teddies and blankets, in their little nursery here at home. I set up a desk in this room so I can be with them every day as I write. I kiss them every morning and every evening and tell them how much I love them. It’s the closest I’ll get to nurturing them and being with them. They are every breath I take, every moment of my life: my inspiration. They have showed me how deeply I can love and how resilient, brave and strong I am to carry on living without them. They have shown me how great the bond Rob and I share is…they’re testament to how much we love each other.

Somehow we scraped ourselves off the floor and managed to ‘try again’ - again, it’s truly a blur for me. The next couple of rounds we tried with donor eggs as I was not well enough to do an egg collection. In April, a negative pregnancy test. This news didn’t affect me much. It paled in comparison to what we had endured in losing our sons. In June we tried again…donor eggs…negative test. 

In September 2018 I had my final ever egg collection.  We were lucky enough to have several embryos frozen and some transferred to our surrogate. I don’t know what the future holds but I’m grateful that we have a few more chances to try and have our own baby.

Meanwhile we cling to each other and try to keep building a life for ourselves - lives after losing our sons.  I spoke to a good friend recently and her words are like a mantra in my ears: “It’s not your fault…It will happen…Don’t give up”.  I can only think that when you make the conscious decision to walk down a certain road, you know you’re rolling the dice on everything that can jump out at you. I suppose it’s a bit like falling in love; you give your heart to someone knowing they might not look after it.  Your heart might get broken but it feels like a risk worth taking.  Maybe it’s harder to live life without the risks; surrounded by the ‘what ifs’.  

We still have hope and it’s easier to hold on to that than to let it go.  

The loss of a pregnancy, the loss of a baby, the loss of a child - they’re all losses that are painful beyond all imagination.  From my experience the longing never leaves you.  The grief you feel cannot be worked through or removed somehow; it’s a pain in the core of your being that you just live around.  I carry the pain of our losses in my heart and sometimes, when I least expect it, it overflows and I cannot contain it.  But grief is love and the love I have for our sons is one of the greatest things I will ever have.

I started my blog to try and help others struggling to start a family.  It feels like I have a wealth of experience to call on and I know I’ve learned many skills to help me cope with the emotional side of treatment, loss and the endless waiting.  I know there will be others reading this and I want to send my love out to you.  This journey is so tough but in speaking out we are all less alone on the road, whatever our destinations might be.

If you’d like to continue to follow Celia’s journey as she continues to navigate through IVF, you can visit her blog, www.theivfsurvivor.com or follow her on Instagram @theivfsurvivor