Blog, Parenting

Lucy & Bryonie’s Story

It is my eldest daughters 8th Birthday today in heaven. They passed away in April and May 2007.

Not a moment goes by when we do not love them, miss them or want them. They are everything, just like their two little rainbow sisters.

This was written in 2007, just after my eldest daughter passed away.

Here is their story…………

I’m from St. Helens in Merseyside originally and moved to Bradford after meeting my husband who is from Bradford, at University. We had been married for about 4 months when I fell pregnant. I was 24 and my husband 25 at the time. My husband and I were ecstatic, because we had always wanted to have kids when we were married and it had happened so quickly. Although I was feeling awfully ill, I was still overjoyed to be pregnant.

At my 12 week scan I was told that I was actually 9 weeks pregnant and not 12 and… I was having twins! I was totally shocked and thrilled. It was such a big challenge to be having two, but we were just happy that everything was okay at that stage. At my 14 week scan they told me that my twins were identical (diamniotic) and monochorionic. I would have to have a scan every 2 weeks to make sure they were okay, but I didn’t mind. Unlike other mothers I would be able to see my babies a great deal during my pregnancy and above all, it was very reassuring to see my little ones growing and changing.

At 20 weeks I found out I was having girls. I hadn’t cared what gender they were, as long as they were born healthy and okay. My pregnancy at this stage was pretty bad though. I was sick constantly and losing weight. Plus, I was feeling very faint and even passing out. I had a month off work to try and recover. When I came back, the fainting and sickness subsided a lot and I began to enjoy being pregnant.

A week after my 22 week scan, into my 23rd week, I was out shopping with my husband when I suddenly felt an enormous amount of pain. I stupidly put it down to my uterus stretching as I had had pain like that all the way through my pregnancy, so thought nothing of it, as I was quite big at that point. The same day, I noticed I was losing some fluid too. I thought it was urine due to how weak my bladder was now and thought it was that. The next day, I felt fine and then put it down to that. The day after, at work, the pain returned, except it wasn’t going. I asked my boss to help me. She phoned the maternity unit for me and then took me in after they told her to.

No-one takes chances with twins.

I was taken by my boss to the delivery suite at Bradford Royal Infirmary, where they told me that I was indeed in labour, but that it wasn’t advanced enough to be too concerned about and they gave me some drugs to stop it and it eventually did go away. My boss stayed until my husband could get to me. He phoned my family and told them what happened, as well as his own.

They were not willing to let me go home, or, for that matter, leave the delivery suite.

The next day, I saw my consultant who was on that weekend. She scanned me and told me that she didn’t like the look of the fluid surrounding one of the babies. She scanned me again and confirmed that it was twin to twin transfusion syndrome. She told me that although this was stage 4, the most advanced and there was absolutely nothing I could have done, no matter what day they caught this on; they could perhaps still try and find a way to save the babies, or at least keep them in there longer. I had just entered my 24th week that day, which gave my babies a bit of viability. Also, by law, a baby becomes a person and is able to be registered at this point in their lives.

My consultant told me that she would get me transferred to Leeds General Infirmary to have foetal medicine look at me. They would be able to see how the blood vessels were organised in the placenta and check the babies in more detail. They could recommend me for laser surgery in London at Kings if they felt I was okay enough. This was the best we could hope for.

I was transferred by ambulance with a midwife and my husband. When we got there, I was scanned by one of the doctors. She looked only very briefly at my girls and then went to get the consultant. I didn’t think anything of that. I was still in hope that everything would be okay. The consultant came in and looked momentarily at Lucy, the larger of the two who had all the fluid round her, but she hovered over Bryonie, the smaller twin.

As there was a monitor above the bed, I could see what they saw. She just was not moving. I thought perhaps she was sleeping, but I couldn’t see her familiar heartbeat either. I turned to the consultant and asked “Is she still alive?” She looked at me and simply said “No, Catherine, she’s not”.

I became absolutely hysterical.

I cried my eyes out and pleaded with the consultant to try and save my other baby. I couldn’t get it into my mind that I had lost one. I couldn’t lose two. They took me out to the family room where I, my husband and the midwife each cried our eyes out. When I was calmer, they took me back in and looked solely at Lucy.

She was wide awake and full of life. She was drinking her fluid and wriggling about. The consultant told me I had a naughty daughter and that made me smile. I had one baby to cling to. They concluded that my daughter was okay, there were no obvious signs of problems and that the placenta and cord were okay. I went into labour there and then though, through the shock of losing Bryonie. I was taken to the delivery suite, but the labour left and I was moved to a side room in a ward and then a couple of days later, transferred back to Bradford, with a midwife accompanying me. I went into labour again during transport. It eventually died down a bit, but at 4:30am the next day, I went into labour again and it did not stop until I gave birth.

On Thursday 5th April 2007, at 24 weeks and 5 days of pregnancy, Lucy Charlotte was born alive and wriggling at 7:57pm weighing 1lb 10 oz. She was taken away immediately by the neonatal team, who let me touch the top of her head before taking her away. Bryonie Catherine was born three minutes later at 8pm exactly, weighing 460 grams. She was curled up and still inside her little sack. The midwife, an amazing lady, took her out and looked at her. She said “Oh, she’s just perfect” and I started to cry.

She wrapped her up in a blanket and handed her to me. She felt warm still, despite dying four days previously, because she was in me. Her eyes and mouth were closed and a tiny dribble of blood came from her nose. She looked like she’d been in a war. She was bruised and her skin was an unhappy combination of purple and pink, but the midwife was right – Bryonie was perfect.

I looked at her, utterly dejected and my husband took her and wept over her tiny body. She was less than a pound. My mother in law, who was also present at the birth, held her and cried too.

They put her in the clear plastic cot where normal live babies are normally put. My poor little Bryonie.

They cleaned me up and then the next day, they gave me a card, which had Bryonie’s hospital tags which she should have worn. It had her birth weight and her hand and foot prints. There were also pictures of her. She had been cleaned up and dressed too. I was so grateful that the midwife on that night had done that for me. I had a copy of my Bryonie’s pretty face.

They asked if I wanted to see her again and I declined. I didn’t want to remember her as cold, stiff and blue. I wanted to remember her as warm and sleeping like she was the night before. Now I wish I had seen her again, just to hold her and kiss her one last time.

I finally got to meet my Lucy that morning too. She was deep pink and on a ventilator. Tubes and wires came out of her. She was wriggling about and moving. The neonatal nurse looking after her told me I could touch her. I washed my hands thoroughly and tentatively touched my baby’s foot. Her skin, for her first week, was 2 cells deep.

I was discharged the next day. I hated being remotely near other people’s healthy, happy babies. It hurt too much. I went home and just cried for hours. We could lose Lucy at any moment and Bryonie was gone.

Lucy progressed one moment and then went backwards the rest of the time. She would be coping well with the drugs, but then she’d be fighting the ventilator. They had to give her morphine to sedate her and give her pain relief. My baby needed pain relief.

The staff were as wonderful as the midwives were and treated me and my husband brilliantly.

When Lucy was about 2 weeks old, we were told that a duct near Lucy’s heart that everyone has, but closes when we are born, had not closed and was causing a great deal of problems. She was then taken to Leeds General Infirmary and a titanium clip was used to close the duct during a 90 minute operation. How my brave girl coped, I don’t know.

She was the bravest human being I have ever known. She had such courage. Every day something happened to her to distress her and every day, she coped with it and did okay.

The operation was a success, but in the days afterwards, her lungs began to deteriorate and they couldn’t take her back to Bradford.

We stayed with her every day. We sang to her and talked to her. We even read her ‘Guess How Much I Love You?’ We had no idea if she even heard it, but her Dad and I simply read on and read a page each to her.

When Lucy was about three weeks old, the head consultant took us to one side. He told us that Lucy was not making progress and that she was, if she didn’t make progress in the next few days, dying. On the Wednesday, she had a terrible morning where there was too much carbon dioxide in her blood and not enough oxygen. She was getting even worse.

On the Thursday, the consultant led us away one more time to the Quiet Room of the LGI’s neonatal unit. Again we sat down. He had showed us the X-rays of her lungs previously on the ward round. Jesus Christ. There was nothing left of them. I’m not a medical person, but even I can see that lungs should be more or less clear. Hers were white and eaten away by cysts where her alveoli should be. So when we sat down in that room, we knew what was coming. Our precious, beautiful little angel baby was dying. She was leaving us. She wanted to go. We were stunned. We knew it was coming, but it hit us hard when someone finally put it into words.

He said he just couldn’t make her better. Every avenue had been exhausted. It seemed outrageous – they’d only been trying a month. Why not try longer? But then you go through it all and you know they’re right.

We decided to let her get to her 1 month birthday, which was Saturday 5th May, only a couple of days away. She wouldn’t suffer any further before then. We thought she deserved to get there after all she was such a tough little baby with such tenacity for life.

This miserable life.

Why did she want so much to be a part of it?

They wanted to withdraw intensive care. They were onto palliative care from then. I spent every moment I could with my darling baby after that. Counting her fingers and toes, kissing her head and talking to her – telling her about me and her family. All the things she would have learned when she grew up. The hours seemed to just slip by. My precious girl was going to leave me and no matter how many photos’ I took or dresses I put her in, it seemed like nothing at all.

In the early hours of Saturday morning, the sister on the ward, assisted by the registrar doctor and a nurse let me hold my baby for the first time ever. It took three of them to lift my 1lb 13oz baby and all her wires and place her into my lap. It was the most magical moment of my life. I had my photo taken with her and I cradled her close to me. She was beautiful. So perfect and so absolutely tiny.

I wanted to speak to the consultant on-call at about 11am, after all our family had arrived – just to make sure I was doing the right thing. I’m an educated and realistic human being, except I’m a mother and I cannot ignore my instinct to protect her. I had to be absolutely sure that she was definitely dying. I had to hear it one last time.

The consultant happily answered every single question I had and explained as best he could, which was very well, how ill she was. He said that she was dying and that her lungs were so far gone that she could not possibly recover. It took me a while of agonizing to agree to it and end my darling baby’s suffering.

2 minutes later, something supernatural happened.

As we discussed how to go about taking her off her ventilator, a knock came to the door. It was one of the nurses. She said it was urgent and out the consultant went. Moments later he told us that it was Lucy. She literally had heard that her Mummy had now given her permission to go onto that silent place without her and she had given up on her fight. She was so tired. She took the decision out of my hands for me.

No-one, none of the terrified nurses or doctors that greeted us as she ran back in to see her could get over it. They all couldn’t get over the timing. My god in heaven, my angel knew it was time to spread her wings because her Mummy had told her it was okay.

It seemed to happen in a few moments that lasted hours. Before we knew what was going on, I dashed to the quiet room where all my family where and told them that she was going and it was happening now. My brother gave me a big hug and I ran out again. They handed Lucy to me, like they did the previous night, but with less wires attached to her. Then Thomas held her whilst they pulled her breathing tube out. Then he handed her to me.

Within moments, we were in the Quiet room, whilst they wheeled her Morphine and Medazolam in behind us – to keep her out of it.

She died in that room in her Mummy’s arms, surrounded by her family. After the consultant confirmed that she had died, I wept for the longest time.

My poor baby became on Angel before her time.

After everyone got to hold her, I bathed her, changed her nappy and dressed her in her Blessing dress and wrapped her in a blanket. We had her blessed (because I don’t believe in Jesus and chums, but only in God as we’re agnostic) by a really great minister. She looked gorgeous.

The condolences have been pouring in and it is lovely to see so many people have been touched by this tiny little angel-baby and her sleeping little sister. It restores a bit more faith in humanity.

The funerals. Two of the most awful days of our lives.

We opted to put our little girls in the Snowdrop Garden in Bradford. It’s a communal vault where lots of babies (and even children) are buried. It’s run by the hospital and council and free.

The cost, for me, wasn’t an issue. It was the choice. The private lot where they bury children and babies is pretty bleak and dower. It is dark because of all the trees hanging over it and most of the graves are neglected and overgrown. That just upset me. The Snowdrop Garden however, is beautifully kept and get’s the sunshine in the afternoon, which is the time of day children play out when they come home from school. That seemed the much nicer place.

So, twice, I had to watch the back of the estate car from the funeral directors open up to reveal a tiny coffin. What broke my already shattered heart further was that Lucy’s coffin was twice as big as Bryonie’s.

At Bryonie’s funeral, we played ‘Fly‘ by Celine Dion and at Lucy’s we played ‘You are not Alone’ by Michael Jackson. The same readings where used. Why not? They were buried less than a month apart.

Bryonie was buried 23rd April 07 and Lucy 16th May 07.

The council went out of their way to put Lucy next to her sister. Bryonie has Lucy on one side and a very special little boy called Noah on the other.

Now the future… I’ve paid for their plaques to go up in the garden in the next few weeks. This is thanks to a collection held for me at work and the child trust fund voucher awarded to me for Lucy. They will also both be put into the remembrance book in the cemetery too forever. I don’t want anyone to forget my girls.

I know that you have never met them, held them, kissed them or played with them, but let me assure you that they were real and tangible. They were so briefly on this Earth and they will remain in the souls of my husband and me forever and ever. Just because you never knew my gorgeous, beautiful, perfect little girls, I do not want you to forget them. Please hold them in your heart and in your prayers, because that is where they will always be.

“For All Our Babies – So Deeply Loved, So Briefly Known”

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