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Osteogenesis Imperfecta – The Story of Allegra Joy

Osteogenesis Imperfecta – The Story of Allegra Joy

The Story of Allegra Joy

Imagine coming to the realisation that death is the best thing you can do for your child. That the cold empty eternity of death is the kindest decision that you, as a mother, can make for your child. That the alternative, giving your child life, is worse. That your child’s life would be so short and so crippled with pain and suffering that it is best that they do not have one at all. Imagine that is your choice. That is your choice, even though every single fibre in your body is SCREAMING at you to protect your baby. To keep her safe at ALL costs. To run away and hide from the world so you do not have to make this decision and can instead ignore reality and be together forever. That despite all of that being true, you still make that choice. You make the call.

Because that was my choice. Our choice. And it’s the choice that thousands of other parents have to make every year. But we often make it silently. We don’t tell the world of our choice and the real reason that we do not have our baby in our arms. Because what parent would choose death for their child? What mother? The thought of it is surely too awful and repugnant to comprehend.

So I am going to tell you the story of Allegra Joy.  And then maybe you will begin to understand the complete and utter heart-wrenching level of love and mercy that goes into a decision like ours. And how that choice, is really not a choice at all.

Allegra Joy is our baby girl who was born sleeping at 3:08am on Wednesday 22 January 2020. She was born at 23 weeks and 5 days but she had died at 23 weeks and 3 days old.  She was 30 cm long and weighed 530 grams.  Allegra was loved and wanted more than anything in the world.

Pregnancy

I always had a feeling that I wasn’t going to get to bring this baby home. While most women feel such excitement and happiness at a positive pregnancy test, that wasn’t really the case for me. Not because I didn’t want a baby, but because I just had this underlying feeling that it wasn’t going to actually happen. I just couldn’t see it working out.

I was extremely lucky with pregnancy in terms of symptoms. Apart from a bit of fatigue, I felt absolutely fine. I didn’t suffer with morning sickness like most women do. I didn’t put on lots of weight. I felt well and continued to run and carried on pretty normally. Whilst all this was good, it made the pregnancy feel very unreal to me. Was I actually even pregnant?!

I presumed I’d have a miscarriage. I was part of an online pregnancy group and some of the women sadly went to their first scans only to find there was no heartbeat. I was convinced this would be the case for me too. So much so, that I paid for a private scan at 10 weeks. There was a heartbeat! And it was strong and beautiful and real. My baby was real! I saw her (although of course we didn’t know the sex then) wriggle her little arms and legs on the screen. She was strong. She was healthy. She was alive!

Something changed in me after that first scan. I had now seen our baby and I could not stop thinking about her. I kept that first scan pic on my phone. I made an album for it so that it was the first thing I’d see when I looked at my photos. She was real and I allowed myself to start connecting with her. I already loved her so so much.

The peace that scan brought me was short-lived. I then became convinced that our baby would have something wrong with her. My sister in law had very sadly had a termination a couple of years before because her baby had Edwards Syndrome. My Dad and his first wife lost their son to Downs.

It seemed very likely to me that our baby would have a similar fate. And so I paid again for another private scan and testing to see if the baby had any of the 3 main chromosome disorders. 8 days later we found out that she didn’t. She was healthy. And she was a “she”! This was when we learnt we were having a baby girl. We were overjoyed. To this day, I don’t think I have felt a happiness like that in all my life.  Maybe I had been wrong all along?

At 15W at my routine midwife appointment, I heard her heartbeat for the first time. Another milestone passed!

A week later, I started feeling her, and at 18.5W we felt her first, proper, strong, definitive movement! My husband had his hand on my little bump and we marveled as we felt her flip and roll for the first time! It was the most magical moment. Happy tears formed in our eyes!

I felt her all the time after that. I loved it. I felt her most when we went running. “She must like it!” I said. I pictured us being one of those annoyingly perfect families who go running together. It was glorious.

Our 20 Week Scan

But as the 20W anatomy scan loomed, I couldn’t shake off a feeling of foreboding. The feeling persisted and I felt quite sure they would find something wrong. I decided they would find that maybe her heart or kidneys didn’t quite work as they should. But that whatever it was, whilst it would be something to worry about, it could be fixed.

With all her kicking and rolling and movement, our baby girl was too strong for it to be anything too sinister. “I’ve never heard of anyone ever getting bad news at the 20W scan” my sister said.  I tried to cling on to that.

The morning of the scan came and it was the most beautiful day. One of those brilliantly sunny winter days when the air is cold and crisp but you can feel the slight warmth of the golden sun on your skin. “Nothing bad can possibly happen on a day as beautiful as this,” I thought.

The scan began well. We saw her little face! She was drinking the amniotic fluid. “That’s her practising on getting her lungs to work!” the sonographer said. I felt so happy at seeing this. My heart could have burst with pride! “We’ll take a few pics of this as it’s such a lovely angle and we may not get any more if she moves.” There were no more pictures.

I tried to stay calm as I realised how long everything was taking. The sonographer was silent. She was spending such a long time looking at certain body parts. I tried to concentrate on breathing deeply and steadily. “Maybe this is just how long these scans take?” I thought. I wished.

45 minutes later, as I got dressed the sonographer said to us “so, baby’s brain, heart, lungs and all her organs look great. There’s just an issue with her legs – her femurs are measuring abnormally short and they look bowed”. It was then our hearts stopped and our world fell out from under our feet. “But! She’s healthy! We had tests done, they came back clear! She can’t have anything wrong with her!” I said. I pleaded. It was no use.

“I’ll just go and get someone to talk to you” the sonographer said before leading us into the “bad news room.” The room without windows and with tissues on the table. The room that no-one wants to be in, especially at 20W of pregnancy. Halfway to the finish line.

It was just after Christmas and so the consultant at the hospital was on holiday. We had to be referred to Fetal Medicine at a neighbouring hospital in 5 days’ time. And so began 5 torturous days of unbearable tears, and 4 long and sleepless nights of scouring the internet for any shred of hope. There was little.

Fetal Medicine & The Diagnosis

We went to our appointment and had another incredibly long and detailed scan. The consultant confirmed that our baby’s femurs were, indeed, short and bowed but that everything else looked perfect. He scratched his head. “I cannot see anything to suggest her condition is life-limiting” he said. But we were looking at a disabled child. A child whose legs wouldn’t be normal. We weren’t going to be one of those annoyingly perfect families who go running together. Our daughter may never run at all.

The consultant talked us through the various options.  It seemed inevitable our daughter would have to spend long periods in hospital having various surgeries to try and correct the shape and length of her bones.  An overwhelmingly hard and miserable start to her life. We discussed termination.  The ethics and morality of making either decision weighed heavily on both of us making our heads spin.

They took blood samples and I had an amnio done. The samples were sent to a specialist in London. I pinned all of my hopes and dreams on this specialist. Surely she would confirm this was all just an awful and terrible mistake.

She didn’t.  2.5 agonising weeks later, we got the call.  “I’m sorry, but your baby has been diagnosed with Osteogenesis Imperfecta and because it is showing in utero, we do believe it to be quite severe.  If you would like to have a termination, the consultant could see you on Monday.” 

So, there it was.  Our baby had a condition which meant that her bones would not grow correctly.  They would shatter and break at the slightest thing.  Every bone in her body would be affected, not just her legs. Even if she survived the rest of the pregnancy, even if she survived the birth, she would still die within a few days because her rib cage wouldn’t be able to grow correctly in order to allow her lungs and heart to develop properly.  Our baby was going to die, it was just a matter of how and when.

“Is she in any pain?” I sobbed.  “We don’t think so at the moment.  But in a few weeks she might be”.  That was it.  If the only thing I could possibly do for my baby was to prevent her from suffering in any way than that was what I would do. We knew it was what we had to do.

Making Memories

We spent the weekend making as many memories as we could with our baby daughter.  We walked one of our favourite walks on the hill by where we live.  The same walk we had done when we had first found out I was pregnant.  We rested on a bench which has the most beautiful view over our town.  We talked to her.  I held and stroked my little bump over and over. 

After that, we went to our local pub to have a drink and a toast to her.  It seemed pointless to not have a drink now; this was going to be the first, the last, and the only time I would share a couple of glasses of wine with my daughter.  Our friends came and we talked and cried and laughed and cried again.  They will never know how much that time together meant to me.  To feel their love for the tiny baby girl they were never going to meet.

After a couple of hours, my husband and I just wanted to be alone with our baby and so we went home.  For the rest of the weekend, we read to her.  We sang to her.  I cradled that little bump and told her over and over how much I loved her.  I stroked my belly and cried so hard until big, ugly, hot tears streamed down my face and sploshed angrily onto the floor. By the time Monday came, I was completely exhausted by it all. 

Saying Goodbye

We drove to the hospital in a stunned silence.  This should not be happening.  This was not how our first pregnancy was supposed to end.  It was all so completely and utterly wrong.  Again that feeling of wanting to run away consumed me, was I really going to let this happen?  I somehow managed to force myself to walk through the front doors and along the corridors to Fetal Medicine.

Upon arrival, the consultant talked us through everything from the top.  No, it wasn’t a mistake.  No, there is no cure.  Yes, we do think it is a severe form.  “There is nothing you could have done to prevent this.  There is nothing you have done to cause this.  It is a spelling mistake in her DNA and it would have been set in stone from the moment of conception,” he explained.  Hearing these words didn’t really make any of it any easier. 

He asked us if we wanted to speak to people who were living with OI.  It would take a few weeks to set up such a meeting, but it could be done.  It seemed pointless – our daughter did not have the mild form.  She would die long before she would ever be able to talk.  She would suffer.  And, quite honestly, I couldn’t bear to drag this out for any longer.  Our decision was made.  Even though it broke every single part of us to make it.

They gave me a tablet to stop the pregnancy hormone and then a sedative to relax me.  It seemed miraculous to me that it actually worked, considering the extreme turmoil and distress I was in.  I felt very calm.  The midwife told me that our daughter would also be feeling like this.  I chose to believe it.

About half an hour later, I was led into another room where I had to lie down whilst the consultant used an ultrasound to locate our baby’s heart.  You see, if you are terminating a pregnancy in the UK after 22 weeks you are required to first have an injection to stop the heart.  This is to prevent any unnecessary distress or suffering for the baby.

The screens were facing away from me, but I saw the shock in our consultant’s eyes as he carried out the scan.  “Oh, I’m so sorry, I can see that her bones are already beginning to fracture….in her ribs and….” He didn’t finish the sentence.  He didn’t need to.  It cut me to the very core to know that in less than 3 weeks since our last scan, our baby was already starting to break her bones whilst in my womb; the one place she should have been safe and protected from the world but she wasn’t. 

I gave my final consent to him to administer the injection.  All of us in that room were in tears by this point.  What could be worse than this?  Mercifully, it happened quickly and fairly painlessly.  I imagined our daughter’s soul leaving my body at that point.  I kissed it goodbye.

An appointment was made for us the next day at our local hospital to induce labour.  I’m not sure many people realise that when your baby dies at this gestation, the only way for them to come out is through labour and delivery.  But that was tomorrow which meant that today we now had to go home. 

I cannot begin to describe to you the distress and sadness of still being pregnant but knowing that your baby is dead.  It seemed to me to be one of the cruelest parts of the whole ordeal.  No more rolls, no more kicks.  Just the still sadness of your pregnant belly and your baby within it already gone.  It was unbearable.

The Birth

We somehow got through the night and as we arrived at the hospital the next day, my legs felt heavy and weak as we approached the doors of the delivery ward.  I remember realising how woefully unprepared I was for this.  I had never given birth before, I hadn’t had the chance to attend any classes.  I had absolutely no idea what to expect. 

But once I got into the Butterfly Suite (a specialist Bereavement Suite at the hospital), I developed a very strange sense of calm.  I had one job left to do for our baby girl and I was not going to let her down.  And we were going to meet her!  We were finally going to meet her!

The midwives began to induce me just after 11am.  Every 4 hours they would come and insert more misoprostol.  The first few hours went by pretty painlessly.  But I was so very cold!  I’m not sure if it was the drugs, the shock, or the fact I hadn’t slept properly in over 3 weeks but my teeth were chattering and my whole body was shaking. 

By 5pm, things were getting a lot more uncomfortable and I had to ask for some more pain relief.  I had managed just on paracetamol until then.  The midwife came and sat me down and took my hands in hers.  “You are suffering enough.  There is absolutely no reason why you have to suffer so much physically as well”. 

I needed her to say that.  I needed her to tell me it was ok to ask for some relief.  There was no reason to be brave here.  My baby was already dead.  We did not need to worry about what too much pain relief would do to her.  She gave me some pethidine and the relief was almost instant.

And so we went on like that, every few hours until we got to 11pm.  The pain had grown quite a lot by this point but this was going to have to be the final dose for now, they explained.  If this didn’t make the baby come then they would give me a 12 hour break before starting it again tomorrow.  I didn’t want that.  I didn’t want to wait anymore.  I just wanted it to be over now.  “Why can’t at least this part go right?” I thought to myself.

After more pain relief, I managed to fall into a sort of half-sleep until about 1am.  Upon waking, I had the sudden urge to go to the bathroom.  As I threw my legs over the side of the bed, I suddenly felt covered in wetness.  My waters had broken.  I screamed at my husband to get the midwife.  For the first time, I felt really scared.  I didn’t know what to do, I wasn’t ready for this.  I wanted to go to the bathroom but I was terrified that the baby would just fall out into the toilet.  I was in complete and utter panic.

The midwife rushed in and, in that moment, she was like an angel to me.  So kind, so calm, so reassuring.  It was a different midwife to earlier as there had been a shift-change at 7pm.  She was no less wonderful.  She took my hands in hers and said to me “I’m going to get you through this.  It’s going to be alright”. 

But, that’s when the pain really kicked in!  It was like my waters had acted like some sort of filter until now.  Big, rolling, building contractions which were so strong and painful, they made me physically sick.  Everything was a blur at that point.  There was nothing else in my mind but trying to get through the pain.  They gave me morphine but it seemed to make little difference. 

I felt like I deserved this.  I deserved this pain and all of the pain in the world because I was the mother who chose to end the life of her baby.  I truly believed that, a part of me still does.  And so on it went until about 3am when I could suddenly feel some pressure down below.  I shouted at my husband to get the midwife again and, sure enough, at 3:08am our baby girl was here.  There was an instant physical relief. 

Meeting Allegra

I’m ashamed to say I was too scared to meet our daughter at that point.  The midwife said she would take her away and keep her company for a couple of hours whilst I attempted to get some sleep.  In the stillness and quiet of the night that followed, I felt like I was in another world.  Nothing felt real.  Surely, I would wake up and it all be the most horrific dream?  I knew it wasn’t.

After a couple of hours of attempting to sleep, one of the midwives came into room to get some tiny knitted clothes out of the wardrobe next to me.  The wardrobe was full of them.  I hadn’t realised before.  Tiny knitted hats and dresses and cardigans.  I imagined rows of white-haired grannies kindly knitting all of these precious garments for all those tiny babies who would never make it home.  I wondered if those grannies had lost their own babies once, and this was why they did it?

“I’m so sorry to wake you.  Do you want to meet your baby now?  Oh, she is so beautiful!” The midwife said.  I tried to hold back my tears before nodding my head.  As they brought her into the room, a tiny bundle wrapped in white, I tried so hard to be brave for her.  To be calm and to not cry, but I failed miserably. 

As soon as they showed me her little face, her tiny sweet hands and feet, the grief consumed me and I let out the most awful, raw, animalistic scream.  I couldn’t help it.  It was like seeing her was the final confirmation that all of this horrendous ordeal was absolutely, most definitely real.  She was gone and it was my fault.  I had failed in my most important role as her mother – I had failed to protect her.

I asked to see her legs. I had to see them. And so the midwife moved the little white blanket enough so I could see that her little thighs were, indeed, not the shape they were supposed to be.  Another blood-curdling animalistic scream. But I had to see it.  And now I knew.  I knew that there was no mistake and that we had made the right choice for our baby daughter.  It finally brought us both some calm and peace.

And so we decided to name her – Allegra Joy.  I’d loved the name Allegra for some time – from the Italian “allegro” which means a happy, bright, spirited piece of music.  “Joy” because that’s what she gave us in the 5.5 months we were expecting her.  Despite my persistent worries, we were so very happy.  The sort of pure, unadulterated, innocent happiness that only a new baby can bring.  She was our happy, joyful, spirited little song, albeit a song that was cut just far, far too short.

For the next 36 hours in that quiet and calm room, we were Allegra’s Mummy and Daddy.  We held her, we took pictures, we sang, we read.  We took it in turns to sit on the side of the bed which was next to her little cot so we could rest our hands on her and stoke the pattern of the little woollen blanket she was wrapped in whilst we watched TV or drank some tea. 

We pointed out how she had her Daddy’s nose and eyes, my mouth, and a mix of both our hands and feet!  10 tiny fingers, 10 tiny toes.  Perfect little fingernails.  Tiny dark eyelashes forming.  Our beautifully imperfect, little Allegra.  I tried to commit the feeling of the weight of her in my arms to memory. 

Some of my family came to meet her and took it in turns to hold her.  It felt almost normal, in a way.  This is what happens when you have a baby isn’t it?  We said all the same sorts of things you say and I told them the story of my labour.  I suppose for me, for us, this was normal.  This is my only experience of having a baby.  Of being a mother.  I tried to cherish every single moment of it.

Sometimes I still wish I was in that room and in the calm, suspended reality of it all.  Just the 3 of us, together again.  My Nana once said that “childbirth is one of the worst pains in the world, but it is one that you soon forget”.  And she was right.  I would go through it all again to just have another 36 hours with our baby.  I would do it all again many times over.  Such is my love and my yearning for her. 

But despite the perpetual torment and inconsolability of my grief, I still know that we made the right decision for our baby.  And I hope that you can see that too and how we did not choose death for Allegra.  We chose love.  We chose mercy.  We chose peace.  We chose to set her free.

Georgina and her husband, Joe, so bravely share this story with us today. They live in the UK and have one child- Allegra Joy. They enjoy good food, good wine, and running to try and balance that all out! They have shared this story with us in honor of Allegra’s memory.

Read April’s full story by clicking above.

Read stories of terminations for medical reasons by clicking above.

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Add your angel to the remembrance page by clicking above.