We fell pregnant with our rainbow baby 3 months after Rudy was born, we were due in January and although I had some anxieties about having a baby near Rudy’s birthday and being pregnant again, I let myself be happy. Sadly though, at 10 weeks we miscarried in the middle of the pandemic, I was once again told there was no heartbeat and my baby had died. I found out alone because Paul had to wait in the car but at least they said “I’m sorry, there’s no heartbeat” rather than being told the way we were told with Rudy. I felt completely alone and let down because I had had no tests, no one wanted to find out why, nobody even contacted me afterwards to check that the baby had come away by itself. There was no follow up and I just felt alone. Thankfully, I miscarried at home and our little Lully baby came still in its sac and I couldn’t believe how formed a baby already is at 10 weeks. I quickly got on with my life though, still running a care home in the pandemic, life was hectic. We had what the doctor called a chemical pregnancy in October 2020, one day the pregnancy test said “pregnant 1-2” and the next day I started bleeding. Which is why we were completely surprised to find out we were pregnant the following month. In a panic my GP sent me to EPU because he suspected it was the same pregnancy and maybe the bleed was an implantation bleed. But it wasn’t the same pregnancy, a scan confirmed that I was about 5 weeks pregnant and I was to return 2 weeks later. I did have a bleed which continued on and off for the whole two weeks leading up to the next scan and to be honest, I had concluded that this pregnancy was over. And I was even more surprised to see that there was a heartbeat, I think I went into shock because I just started shaking and tears were pouring down my face but I didn’t know I was crying. It was such a weird experience. I had never had a pregnancy like this one before, bleeding had always resulted in a miscarraige and I have never felt so drained and sick in my whole life. This was pregnancy number 7 for me and none of them felt like this. My dating scan came in the post and it was dated for Rudy’s first birthday! I took this as a sign that everything was going to be ok. I arrived at my booking in appointment and I was so glad to have the same midwife that I had with Rudy. She was so nice and she had a student midwife with her. I sat down and instantly burst into tears, I told them everything that had happened since I saw her last and they did everything they could to reassure me. I decided after that to book us into a private scanning clinic, naturally private scanning clinics give me anxiety but I really wanted to reassure myself that everything was progressing nicely and of course, I didn’t book at the same studio as before. At 10 weeks and 4 days, there was our little baby wriggling around on the screen, a little hand and foot waving around. It wasn’t until we got into the car, that my husband said “When are they going to test for chromosome disorder” and I flipped out. I remember shouting at him “Why would you say that, why would you ruin this for me” and he pointed to the back of the baby’s neck in the picture and there it was, a giant ring of fluid that went from the top of the baby’s head, all the way to its bum. I couldn’t believe that I had missed it. The horrible part of that experience was that it was a few days before christmas, I hadn’t put any decorations up because last year I was pregnant with Rudy, we had found out she was a girl a few days before christmas and when we had put the tree and decorations up she was alive and when we took them down she was gone. This time, we suspected our baby had a chromosome disorder as Christmas day came and I hadn’t put decorations up because they made me too sad. We still managed to have a good Christmas but the whole time was spent worrying about this fluid. Plenty of people said “it's just the baby’s sac” or “I’ve seen that on loads of scans and its fine”
On Rudy’s first birthday, I went to the scan with my sister as Paul had only just started a new job that week and it was only his 3rd day. They were running late so by the time we got into the scan, the sonographer was a bit flustered and moody. This got me anxious instantly, I could feel my breaths getting shorter and my body started shaking. She abruptly asked me to take my belly ring out, which I had never been asked to do before so I tried to take it out quickly and breathe at the same time. When the baby popped up on the screen, I was so relieved because I couldn’t see the sac of fluid anymore. The sonographer couldn’t get the right measurements as the baby was in a weird position, so she wanted to go in vaginally. I went for a wee and still couldn’t stop shaking. After a few seconds of looking at the screen, she put her hand on my knee and she said “I am so sorry Nicola, your baby is surrounded by fluid” I felt my sister next me slump forward.
The sonographer gave me the report and I called Paul and he came straight home and we went off to the hospital together. The report said that there was a problem with the kidneys and that the baby had a cystic hygroma measuring at 9mm and potentially had hydrops. We met up with the screening midwife, we had blood tests and she managed to get us into UCLH in London for the next day. On the 7th January, we met with the consultant and had a scan. It was a bit much at that time because he just kept recommending a termination and I kept saying, I just want to know what is wrong first. I had a CVS procedure, where they took part of the placenta and some fluid via a needle through my belly and then we went home. We were told we would have the results in a few days. We got the results from our blood test first which the screening midwife called and explained that because of the neck measurement, there was instantly a chance that the baby had a chromosome disorder. So we just presumed that the baby possibly has down syndrome and other than that, everything may be ok. We were shocked to discover that the results from the CVS actually came back clear of chromosome disorders. It was explained that the fluid could be a result of a heart condition so we needed to return on the 21st January for a heart scan, but that the prognosis was much better. We also found out that our little bubba was a girl.
We thought that there was some hope finally, that she may have a heart condition and that she will need an operation when she is born and she will be fine. Only, when we got back to UCLH the consultant said “Have you decided if you’re going to terminate” I was a bit shocked and I said “No, I thought we were here for her to have a heart scan”
A different consultant came in and scanned me, for about half an hour. The good news for us was that she was still alive, the CVS hadn’t caused a miscarraige. However, our happiness was short-lived. The scan revealed that the cystic hygroma had increased to 12mm of fluid, she had a diaphragmatic hernia and some of the organs had grown through the hole such as the liver and her lungs and heart were compressed, she had a facial deformity, a hand deformity and some kind of problem with her kidneys. We were told that it was a genetic disorder, likely Fryn’s syndrome and that she wouldn’t survive to birth. If she did by some miracle survive to full term, she would die shortly after and would be disfigured and severely handicapped. Fryn’s syndrome is actually really rare, there is not an NHS page for it and no survival rate recorded.
The consultant wrote on our paperwork that we wanted a termination. We hadn’t made that decision and although it seemed like the best decision, we hadn’t even had a chance to discuss it ourselves. This consultant seemed to be trying to force a termination over and over again when it wasn’t his decision to make. We agonised over it and finally we made the decision that if she was going to die anyway then we would let her go on her own. I kept thinking about my own mental health, looking back on it now I am glad I made those decisions even though they may appear selfish to some. I knew that if I had terminated my pregnancy at 15 and a half weeks, that I would never have forgiven myself and it would have traumatised me for the rest of my life.
So our journey to waiting for our baby to die began, we decided to name her Aurora, after sleeping beauty. It was actually a name that I picked before we found out she was going to die because we were going to shorten it to Rory. But as soon as we found out she was going to die, Aurora seemed like the perfect name. We had two weekly scans, sometimes weekly and at each scan her conditions were worse. We were told though that she wasn’t in pain and she wasn’t suffering. At about 20 weeks her bowel became severely blocked and she started to fill with fluid. We went to the same private scanning clinic where we went at 10 weeks and got some videos of her and recorded her heartbeat like we did with Rudy. It was lonely and I hid away because I didn’t want to see people and them notice my belly and ask questions like ooohhhh when are you due or are you excited? Like people do. My sisters visited weekly and some friends and family brought presents for her but it was lonely, I hid away waiting for her to die. At each scan, she was there though alive against all the odds and each time they said she was worse and that it wouldn’t be long but each time she was alive, sucking her thumb and making us fall in love with her even more. We had a meeting with the pediatrician to put the palliative care plan in place for when she was born, so that if she was alive during the birth she would be delivered onto me to pass away with no intervention. At this point her lungs were so compressed that they barely existed so she wouldn’t even take her first breath if she made it to birth. What we didn’t prepare for though, was the danger for me. At 26 weeks she already weighed 3 and half pounds and was putting on a pound a week on average. This was because her bowels were filling with fluid. Her tiny little body and my 26 week placenta were carrying a baby almost the size of a full term baby and it was getting very squished and I was very large and uncomfortable. Finally at our last scan our consultant seemed defeated, she sadly told us that Aurora was too big and if I went any further, she wouldn’t make it through the birth canal because of all of the fluid in her belly and head. So, we prepared to be induced. However, she called later that day to say that we needed 3 doctors to sign off on me being induced from each FMU and she was the only one that agreed. So, our options were to have the feticide (termination) or to keep going and risk me becoming poorly. We cried and we got angry and I was petrified. I didn’t want to have the termination and I was so angry that this was our only option.
I feel like Aurora finally made the decision for me, at this point she moved constantly. All day and all night, she moved. She never rested and I lay there one night in bed, wide awake whilst she was wriggling around and she bucked me so hard and I suddenly thought, what if she can’t rest because she is in pain. What if her bowels and kidneys being blocked is hurting her like it would hurt us. We finally agreed that maybe it was for the best, I was still heartbroken and devastated that this was the outcome after everything we went through and I knew afterwards, I would never be the same person again. How could I be?
I knew I didn’t want to go to London to have the procedure, I don’t know if anyone knows this but you can’t park at the hospital, so we had to go by train everytime we went. And I couldn’t bear the thought of going through with the procedure and then getting the train home. I wanted to be in the car alone with my husband. So, the consultant managed to get us into Southend hospital and I am so glad. The consultant we saw at Southend hospital was amazing and so was the midwife that was assisting him and I was so glad and felt so relieved to know that we were being seen by people that were at least sympathetic. I laid on the bed with my hands above my head, where Paul was sitting so he could hold my hand and I kept my eyes away from the screen whilst they scanned me and put the needle into my belly. It didn’t hurt at all which I was so frightened of, because the CVS was so uncomfortable. I started to panic and hold my breath but the midwife stroked my arm and told me to breathe. He injected our little girl into her heart and she passed away as soon as he started. I like to think that she was ready and that is why she passed away so quickly. I think I must have gone into shock, I think we both did because we cried because she had finally passed away after how hard she fought to be alive and we cried because she was finally at peace, with no suffering or pain. She only knew love. But after a while, we stopped crying and after that we sat in silence and after that we started chatting. The car journey home wasn’t awful and when we got home, we packed and prepared for me to be induced 48 hours later. Looking back on it, I know now that I was in shock because the trauma of what we had just done finally hit me the second Aurora was born.
The worst part of this journey, was that we prepared ourselves and others for what she was going to look like based on the medical professionals' opinions. The words “Severely disfigured” and “Severely handikapped” made us have to mentally prepare people for what she was going to look like. We knew that we loved her no matter what but we feared what other people would say. And some family members have admitted themselves that they too were trying to mentally prepare themselves, but we were all in absolute shock to discover that visually … There was nothing wrong with her and she looked absolutely perfect. That is when the months of preparing and months of waiting finally caught up with me, another part of me died in that second. My perfect baby, with her perfect face and her perfect hands and her amazingly wonderful, perfect feet that I am so obsessed with even now.
The birth was traumatic, in all fairness I have nothing to compare it to so it could have been normal for all I know. With Matilda I had an epidural after 4cm’s so I didn’t feel her birth and with Rudy, I didn’t need to dilate as much to deliver her. I would guess about 4-5 cm’s. It was painful and the contractions were painful, but I honestly thought I could deliver Aurora on just the gas and air like I did with Rudy. It seemed like for hours there was no break in my contractions and one of the bereavement midwives actually stayed 2 hours past her shift because it seemed like Aurora was coming. But she didn’t … not until like four hours after that midwife left. The gas and air is absolutely wonderful stuff though, I would go off to be with my sister and come back to me screaming on the toilet, then I would go off and come back and I was screaming, whilst throwing up into a bowl. The joys and dignity of giving birth were completely taken away and I wasn’t in control. Finally, Aurora was born still in her waters which exploded all over the midwives that were there and I am not going to lie, the thought had crossed my mind that it was in fact my baby that had exploded because we had been made aware, in not quite so colourful words, that this was a possibility.
Our little Princess Aurora was born on the 12th April 2021 at 02:47am weighing a whopping 3 and a half pounds on the day that we would have been 27 weeks. 3 and half pounds probably seems like a tiny weight for a baby but she should only have been 1lb for her gestation and the rest of the weight was in her neck and her belly. So she had a little pot belly like her daddy. The facial deformity that we had been warned about was actually a central cleft palate so it didn’t affect her facial features in the slightest, she had parts of her nose features missing but again it was intenernal so her nose just turned slightly upwards which didn’t affect her facial features. She was and always will be beautiful. Her little hands were incredibly cute, her fingers were slightly smaller than usual and bent slightly to one side and her little thumb looked like a toe (so we call her toe thumbs), other than that looking at her she didn’t look as poorly as they had made out. Don’t get me wrong, we knew she was poorly and internally she was too poorly to survive but she was definitely not ‘severely disfigured or deformed’.
Something we didn’t do with Rudy was sing to her, read her stories or chat to her as if she was alive, I think that might have been shock. It is a different kind of grief when your baby dies unexpectedly and you have to deliver them with no knowledge or understanding of baby loss, especially so far along in the pregnancy. I will always regret that we never did those things with Rudy, but I always have to remind myself that it doesn’t matter what we did with our babies and even if we had the chance to do those things that we never did with them, it will never be enough. They should have lived.
We didn’t actually stop talking to Aurora, the entire time we were with her. After she was born, I couldn’t stay awake. So the midwives weighed her and dressed with Paul’s help and then we put her to bed in the cuddle cot and we went to sleep. I say we went to sleep, we snoozed for a few hours. Hospital beds aren’t great and Paul was asleep on a beanbag on the floor so I constantly worried about him. When I got up and went to get my baby, I picked her up as if she was alive and spoke to her. I hadn’t really looked at her properly because I had been so tired. She changed though, her blanket was wet and I thought it was the condensation from the cold cot but it turned out it was the fluid from her belly and neck. So when I started undressing her to look at her feet, she didn’t have her little cute pot belly anymore. She actually looked like a sleeping baby. I kissed her hands and her feet over and over, her daddy kissed her over and over. We made silly chats about how we made each part of her from scratch. We kissed a foot and said “ we made that foot from scratch, in the Dolden Oven” and we kissed her hand and said “We made that toe thumb from scratch” and we kissed her nose and said “We made that nose from scratch”.
We just stared at her for so long because she was just a baby, a beautiful baby with the cutest face and she looked so much like her big sister Matilda and we were just so proud of her, we still are. Of course, we took Rudy with us and got loads of pictures with Rudy too. We didn’t think that people were going to be able to come and see her, because of Covid visitors were not allowed. Luckily for us though, Aurora was born on the 12th April which was the day some restrictions were eased and when they said if we wanted people to come and see her, they were allowed to. My sister jumped in the longest taxi ride in the world and Paul’s mum jumped in her car and both were there at the same time.
I don’t think I would have made it through this without them being able to see her, she managed to have cuddles with her Auntie Tash and her Nanny just like her big sister Rudy did. Paul’s mum kept looking at her all confused and then looking at us and saying “There’s nothing wrong with her face” “There’s nothing wrong with her hands” it made me laugh, because it was as if she was ready to beat up anyone who said otherwise. Like “How dare they say she would be anything other than perfect”. It warmed our hearts to see her Nanny talking to her and kissing her and her Auntie proudly posing for photos with her and talking to her.
After they left, we spent a few more hours with Aurora. We had been given our 4Louis box which contained the softest white blanket and I knew that it was what I wanted her wrapped in. It made us feel so much better to have her wrapped in the fluffiest, softest blanket, So I took her little elephant blanket that she had been wrapped in all night and swapped them over. We had been able to get her footprints and had her hands and feet casted, we got all the photos we wanted. We read her “Guess how much I love you” and we kissed her 100 times more. Then we made the decision to let them take her away.
With Rudy, we left the room and she was still in the moses basket. I thought that if they took Aurora first maybe it would be easier leaving an empty room. But it wasn’t easier. That is when the shock of what we had done hit me. It was the worst feeling I have ever had in my life and it came out of nowhere. It is the worst feeling in the world being able to pinpoint the exact time and date that your child died, the exact moment their heart stopped beating. And for it to have been your decision for that to happen. I wanted to die in that moment and sometimes admitting that shocks people and sometimes it doesn’t, sometimes they know what I mean. But in that moment as we left the hospital and this dark cloud clung to my head, my brain, nose and eyes compressed from all of the crying. I thought of the easiest and quickest ways to end my life. It didn’t actually matter if they were painful because it felt like it was what I deserved. Those days after were worse than I ever could have imagined them to be. I am still not sure why they were so bad, I don’t know if it was because of the feticide or if it was because we were further along or if it was because of my grief for Rudy on top of my grief for Aurora, but those few days after Aurora was born were so bad for me. I remember thinking “this must be what depression feels like” and “If this is what depressed people feel like everyday of their lives, I understand why they give up” I honestly thought that I could prepare for it, I spent 11 weeks planning every detail of our hello and goodbye with our beautiful girl, and truth be told, it is not something you can ever prepare for.
When Aurora arrived back at the hospital after her post mortem, I asked one of the ladies from the bereavement team to change her clothes and send some photos and when they came over to our house I got Aurora’s clothes back. The ones she was wearing in all of the photos we have, I have them now in her memory box with her blanket. We also received her hand and feet casts, which are the most precious things that I own and I guard them with my life.
When Aurora arrived at the funeral home, I really fought with myself about seeing her again. Not because of how she would look or anything like that, I just don’t think I physically had it in me to leave her again. It is the hardest part in the world, the guilt that takes over. Even though you know in your heart that there is nothing you can do and they have to go, you can’t stop yourself feeling like you’ve abandoned them and that they are alone. I wanted everything to be with her and to tell her that I love her. My sister wanted to see her again and so she did it for me. We drove to the funeral home and I had so many things to give Aurora and swap things over. The Blossom suite gave us 2 of everything and she had a set and we had a set. And every night I had slept with these things under my pillow, then my sister swapped them over for me. So I got Aurora’s and she got mine.
My sister didn’t come out of there the way that she went in, my heart will always break because of it and she says that it was an honour to do it for me but I feel as if I gave my burden to her. She couldn’t leave her just as I knew that I wouldn’t be able to. What turned into a quick 15 minute visit ended with an hour and a half of my sister not being able to leave the room. She read “Guess how much I love you” to her and left the book with her. She gave her a big nut brown hair, the penguin that nanny made for her, she sang “you are my sunshine” to her and she took photos for me, all snug in her bed.
Aurora’s funeral was incredible, I couldn’t have asked for anything better. The crematorium was amazing, the service was amazing and the funeral director did an amazing job. It was the perfect send off for our little princess. And when her ashes arrived home, we recorded her heartbeat into a giant jellycat elephant and then sewed her into it. It is the most raggy, fluffy, soft elephant and it is ginormous, but we can get a good cuddle out of it.
We finally received her post mortem results 3 months and 2 days after she was born, which confirmed she had Fryn’s syndrome. The next part of our journey now is to wait for our referral to genetics. This is where they will test her samples to see if she has the gene, if she does then it means that she likely inherited it from my genes or Paul’s genes, or both. If she doesn’t have the gene then it was just some kind of mutation error during conception. We won't actually know if Rudy ever had the same condition or if that is why our Lully Baby died but for now we just have to wait and see. We will have to maybe get used to the idea, that we won't ever be bringing another baby home.
Once upon a time in a far away land, a princess was to be born to a King and Queen who so desperately wished to meet her. People from far and wide celebrated the princess and sent her gifts of blessings and wishes.
"She will be beautiful"
"She will be kind"
"She will be clever"
The King and Queen had decided to name the Princess, Aurora.
Unknown to the King and Queen, a spell had been cast on the princess that meant she would soon fall into a deep sleep, from which she would never awake. When the King and Queen learned of their daughter's fate, they tried everything they could to prevent the spell from working.
When the King and Queen discovered that there was nothing they could do to prevent the spell from working, they made promises to Princess Aurora, that they would love her and think of her always.
The King and Queen waited for the princess to fall into her deep sleep, they waited and they waited, each day loving her more and more.
When the princess was finally born, she was fast asleep and ever so beautiful. The King and Queen's sleeping beauty, Aurora had finally arrived.
But it was not goodbye forever, for the Queen had learned how to break the spell. Their sleeping beauty would awaken one day, when the King and Queen would fall into their own deep sleep. But they could not go to sleep now of course, for they had another Princess to care for.
So, the King and Queen kissed their sleeping beauty for one last time and let her sleep her long sleep, knowing that they will meet her when they dreamed their own dreams.
