Aurelia's scan at 13 weeks

So far…

We’d been like children counting down the days till Christmas as to when we’d see our little baby again, wiggling and jiggling, yawning and stretching, at our 20 week scan on April Fool’s Day. Laid on the sonographer’s couch, I couldn’t see the screen, all I could watch was the sonographer’s face. As she went through the scan she kept pulling a puzzled face which unnerved me, so instead I spent a joyful ten minutes watching Gerard’s face as he smiled in awe watching his little baby be checked over, and asking questions about what he was seeing.

And then suddenly we were hearing that baby is measuring 20 weeks but their limbs are short, very short, 5-6 weeks behind in development, and she was bringing in her colleague to double check she hadn’t got it wrong.

It was like being punched in the stomach. The little baby who’d I’d done everything I could to protect, hadn’t in fact been protected. I sobbed in anguish as our baby’s life flashed before my eyes, not because they were any less wanted, but simply that I knew immediately this probably meant a significant disability that would make life harder for them when, as a parent, you (perhaps naively) want as simple and protected life as possible.

I remember as the second sonographer came in I was desperately apologising, wondering perhaps if my fear and tears ware an over-reaction, but she comforted me that ‘you wouldn’t be a mum if you weren’t so upset.’ As she checked the results I was keenly aware this wasn’t just my load to bear. Gerard held my hand tighter than ever before- both of us helpless though keenly aware that we were stronger together. I was also aware of a small voice in my head saying ‘God will give you nothing you can’t handle.’

The second sonographer confirmed the first’s measurements. Pleading for some answers, they stated they were no experts in what this was, but they suspected this might be dwarfism.

We were given a follow up appointment for the following Tuesday (it being a Friday) with a consultant in fetal medicine and assured we’d get more answers from them.

We traveled home, I continued to cry, whilst Gerard softly spoke words of reassurance and comfort, reminding me of all that we believed about this baby.

Over the next few days, whilst grieving for the loss of the life we’d expected for our baby, we came to a relative place of peace. We read up on dwarfism, and were reassured by the normality of life we’d be able to give our child. We were comforted by our conviction that our baby was still fearfully and wonderfully made by God, and that God had trusted us with this special baby.

We were strengthened further by the love and support of friends and family. Words of encouragement, of love, and promises of prayer all made a difference. On the Saturday we met with friends who simply helped us by giving us an enjoyable afternoon and thereby the clear mind to process what we were going through. On the Sunday half our church stood at the front with us, praying earnestly for all three of us. I felt so at peace with the situation- of course we longed for a miracle. No parent wants their child to “different” in a way that will cause them difficulty- but we knew how much joy we could bring to this child’s life and vice versa.

That’s not to say we didn’t struggle. For me the morning’s seemed to be the worst time when I’d weep for my baby. Every emotion passed through me too. Fear of the birth- how would I react when I saw my baby for the first time? Would I be repulsed by their limbs? Would I be able to connect with my child? Disappointment that this wasn’t the perfect baby I was expecting. Jealousy of all the mothers walking around with their perfect babies. Guilt- had I done something wrong?

There was also an increasing niggle in our minds as we got closer to the appointment that the news wouldn’t end with a ‘simple’ diagnosis of dwarfism. We’d become aware in our research that there were certain causes of dwarfism that could potentially cause future emotional pain for our baby. For instance Turner syndrome in girls would mean infertility. I was also frightened that baby would have a more significant disability which could cause significant physical and mental pain too. I felt the tension of my beliefs and emotions acutely as on the one hand there was my fierce conviction that every life is God’s and valuable, but on the other hand I felt the compassion of my heart/maternal instincts ache at the thought of allowing my child to suffer.

On Tuesday, the morning of our appointment in the shower with tears running down I pleaded with God, don’t give them a disability which will mean a life of acute suffering. If a miracle hasn’t happened, and dwarfism isn’t your plan, let them be with you, please.

However on going to our appointment we were optimistic. I remember in the lift in the hospital pointing out to Gerard how big my bump was going to get, never expecting we might be facing a possibility where my pregnancy might end much earlier.

As we went into the specialist’s room her first words were ‘Do you know why you’re here?’ We confidently replied that, yes we did, as the sonographer had prepared us for the likelihood that our baby had dwarfism. The consultant corrected us immediately, and said whilst sonographers made mistakes, if they were right, this was NOT the most common form of dwarfism. Baby’s limbs were much too short for that. In retrospect we think she knew before she even started the scan our baby was very poorly.

She warned us that she’d have to take some time taking the measurements. At one point I saw something on the screen which I could only deduce was a leg, but I knew it was not how a leg should look even to my untrained eye. She confirmed it was indeed a leg and that not only were baby’s legs short but also very bowed. I asked so this means we have a very poorly baby? She confirmed this was so, but at this point all I thought was that we were going to have a baby with very severe mobility issues. Nothing had been said about their brain, and she’d confirmed a number of baby’s organs such as kidneys and bladder were ok.

It was then we got the final blow. Our baby had skeletal dysplasia of the most severe form which meant baby’s chest was also not developing, and was small compared to their abdomen. The implications of this is that our baby will not be able to breathe after birth and will die.

After initial tears, we sat down with the consultant and were given three options to consider 1) Blood tests to establish what has caused this skeletal dysplasia 2) an appointment with another specialist for confirmation of baby’s prognosis 3) termination.

Wanting to know the full facts before making any decisions, and also thinking about our future children we decided to go ahead with  tests and another consultation.

We were taken to a side room where we given some time to collect ourselves and wait to be given a referral for another specialist and take some blood for tests. I felt strangely numb/peaceful somehow but it broke my heart to hear Gerard weep for our baby so small and so precious who he couldn’t protect.

We were also introduced to the fetal medicine co-ordinator. Our consultant came back in at one point and we decided to ask her the gender of our little baby, and with a big smile (which I was so grateful for) she told us our baby is a little girl. This news gave me both so much joy and so much sadness too. It made her all the more real, and all the more ours somehow.

We were given our appointment and then we were effectively done with the exception of needing to have a blood test taken. We walked in a daze to one of the other units for this and sat in the same waiting area where 6 weeks earlier we’d waited for our first scan.

Arriving home it felt like our whole world had been turned upside down for the second time in a week. But I spent the afternoon sat in the sunshine in our back garden where I remained feeling strangely peaceful. Somehow I was so glad on this day of such sadness the sun was bright and warm, as sunny days would forever remind me of my little girl.

The next morning as I woke up it dawned on me, whilst whatever happens I’ll be able to hold my little girl in my arms, at some point she’ll be taken away from me and I’ll never get her back. Returning to the hospital for more blood tests I remember hearing Adele’s song ‘When We Were Young’ and thinking how it felt Gerard and I had aged 10 years overnight with the hope and optimism of young parents all having melted away overnight.

Post-blood tests we sat for a while in the hospital waiting area watching out at the grey day and the world that was simply carrying on living, pondering what we do next. We didn’t have another appointment for a week, and the thought of going back to our empty house seemed unbearable.

Knowing this was likely to be the only time we ever get with our daughter we decided to make the most of it and start to take her to places we would have done if she were to survive. So we spent a day drinking coffee on the South Bank, visiting the Aquarium and having lunch at Wagamama’s (always a special place to Gerard and I as Gerard proposed after a evening which included dinner at Wagamama’s). It was there we also decided to name our little daughter, Aurelia, which means golden. It seemed to sum up everything she means to us, particularly how treasured she is. Toasting her name, we felt the bittersweetness of our situation sharply.

Later that evening we returned for more blood tests at the hospital after both times insufficient blood had been taken. It was a wrench to have to return to the hospital again,  but it turned out to be a blessing in disguise. Post taking my blood, I asked them to put me on the doppler so Gerard could hear her heartbeat for the first time. As her heartbeat thumped out the machine, fast and strong, it seemed almost ridiculous the prognosis we’d been given. Despite her apparent weakness Aurelia showed her strength at that point with the strongest kick she’d given yet- so strong you could hear the sound squeaking on the doppler.

It’s been five days since we had the news our little girl won’t survive, and we’ve still got a lot to decide and more to find out regarding the prognosis of Aurelia but several things have become apparent in that time;

  1. We do have more than one choice. We warned it would be so, but the hospital only presented one choice to us post-tests, termination. The news that baby won’t be able to breathe meant I envisioned a choice to let her live as long as she wanted and go through birth would be cruel, yet I couldn’t bear the thought I would have to make the decision to end my daughter’s life. We felt between a rock and a hard place, and with baby at the center of any decision we felt we had no choice but to agree to end her life. Having done research however we know that we may indeed be able to let Aurelia live on as long as she wants to and prevent her suffering. We may even be able to get several precious and peaceful hours with her in our arms.  This of course depends on test results and further medical advice and I’m sure I’ll write more about what and why we made this decision in the future, but I will stress I hold no judgement over others who make different decisions to ours. No one can understand the cruelty and difficulty of such a decision till they’ve been through it. However we want people who may be going through a similar dilemma to know that though the medics may not offer this way as a choice (as the assumption will always be you will want to terminate), a choice is there.
  2. In the midst of pain there can be so much joy. Following our trip to the aquarium and the joy it brought us thinking we were sharing it with our daughter, we’ve made a conscious decision to make the most of every moment of this pregnancy. In the last few days we’ve gone to places special to Gerard and I, talked to her more than ever, sung to her and spent hours with our hands resting on my bump warm in the thought she is currently alive and kicking (and most importantly not suffering) beneath our touch.
  3. We are so supported and loved. We’ve received so many words of comfort, prayers and offers of practical support over the last five days. We’ve heard of people weeping in prayer and solidarity with us, and received many a wonderful hug! This has brought great comfort in itself, and I have no doubt that the peace I am now feeling can only be explained by being covered in prayer as it truly is the peace that passes all understanding. We are so thankful to everyone for all their love.
  4. The worst is yet to come. Whatever happens I will have to go through a natural labour. Whilst we may get a short time with our baby girl alive, we may not, and whatever the time will be short before my baby is taken from us. I’m sure part of the peace that I’m feeling is that currently I feel I can do something to help my baby- researching, sewing for her, preparing how we will say goodbye- but I know afterwards we’ll have empty arms and no baby to look after.
  5. God is with us. As I said I feel a peace that passes all understanding. Gerard and I have been a rock to one another over the last few days, but we’ve only managed to be this with the solid foundation of our faith. I’ve found it a comfort knowing we worship a God who understands the pain of losing His child, and more so that little Aurelia will be with God having known nothing of this world’s suffering. I like to think God thinks of her as too precious for this world.

The next step? We have another consultation with another fetal medicine specialist at a different hospital, who should also have the results of our blood test. We are hoping he can clarify certain details of what condition has caused this dysplasia and provide further answers regarding Aurelia’s prognosis. The most likely diagnosis we have thus far however is thanatophoric dysplasia, a random genetic mutation that occurred between conception and Aurelia’s early development. In a bizarre way this gives us hope for the future, as this condition being the most likely, means it is unlikely Gerard and I are carriers of a chromosomal condition that has caused this. However this will only be confirmed when we have a firm diagnosis.

Whilst we don’t mind and indeed cherish people asking questions about how Aurelia, Gerard and I are, we intend to use this as a key place to keep people updated of any news. We also intend to use this as a place to process our thoughts and experiences, as I have found writing so therapeutic in the last few days. And lastly we hope that one day other couples might be comforted, as we have been reading of other’s stories, by reading through our journey.

Thank you once again, from the bottom of our hearts, for all your love and support dear friends and family.

With all our love.

Gerard, Becky and Aurelia.xxxx

P.S. The scan picture is Aurelia at 14 weeks- I will forever cherish this picture of her with her beautiful button nose forever.

 

Advertisements

22 thoughts on “So far…

  1. boucherpye says:

    I’m so very sorry for what you’re going through. I thought of Sarah Williams’ book The Shaming of the Strong, about their experience with their baby having a severe skeletal deformity. I don’t know if you’d want to read their story or not, but hope you don’t mind me (a social-media stranger, I know) mentioning it. I read it some years ago – maybe even a decade – and I still remember it being so honoring to God and so well written. God be with you, I pray.

    Like

    • rebeccamilesphotography says:

      Thank you so much for your prayers and recommendation. I in fact devoured the book in a day last week and have been in touch with Sarah who wrote it as their daughter had exactly the same condition as ours, so I’d fully endorse it as helpful and God honouring! Indeed it’s given us much comfort and strength to carry on with the pregnancy!

      Liked by 1 person

      • boucherpye says:

        Oh I’m so glad to hear that – didn’t want to be out of line during a tough time for you. So glad you’ve been in touch with her as I wondered if your babies had the same condition and no doubt she can be a support like few. xx

        Liked by 1 person

        • rebeccamilesphotography says:

          Wouldn’t have been out of line anyway! I’ve been glad of any recommendations the last week or so, as there’s surprisingly little information (other than detailed medical reports) about what we are facing! Thanks again.xx

          Like

  2. gillian derbyshire says:

    Becky & Gerard
    So, so proud of you: brave, honest & mature.
    When expecting you Becky, I never imagined a problem so huge could punch us at 20 weeks, but His Love and Peace will carry you through this happy and loving, but very sad time in your lives together.
    You know my heart is broken for you all, but with all the very kind messages of comfort you have received, you know you are not alone.
    Mum XXX

    Like

  3. Stewart Johnson says:

    Sitting here in Santa Cruz, CA my tears flowed as I read your account. I will be praying and I will be holding all three of you before the throne of grace where the Lord constantly surpasses all my expectations and those of people who go there too.

    Like

  4. Pat & Chris says:

    You are so precious to us and an inspiration of Faith & maturity. Thank you for sharing your life’s joys & sadness’s with us. We hold you up to our Lord, whose everlasting arms will encompass you throughout this nightmare & as you say – give you His Peace. Love to you xxx

    Like

    • rebeccamilesphotography says:

      Thank you for your love, prayers and wishes of peace. I can’t take much credit for the faith and maturity (points upwards with a Sally Army salute), but am so grateful for the peace and strength I seem to have at the moment by God’s grace.xxx

      Like

  5. Georgina Evangelou says:

    Dear Becky,
    My love and prayers are with you all. After reading this – through tears, Aurelia has a place in all our hearts. A special little girl x

    Like

  6. Kristen Moore says:

    Praying. So deeply affected by your words. We are also having a daughter and just how precious this time you have with her is a reminder to me. Praying for your heart, your child, and your family.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s