ForeverMissed
This memorial website was created in memory of our loved one, Darcie-Rae Johnson, born on November 14, 2019, and passed away on November 14, 2019. We will remember her forever.
Posted by Daisy Johnson on March 15, 2020
love you my beautiful shining star xxx

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Posted by Daisy Johnson on March 15, 2020
love you my beautiful shining star xxx
her Life

The story of my beautiful little angel.

Darcie-Rae Lillie Johnson
I want to share my beautiful daughter’s story, to show how special she is and so people can see what myself and Chris have endured over the last few months.

I’m going to start from the very beginning off when we found out I was pregnant as she was a little pain in the bum from day one.

So here goes ….

Sunday 16th June 2019 is when our journey started, I don’t know why I took a test but something deep down was telling me to take one, although I’m on the pill with my allergies I suppose there’s always that chance and I had been unwell a couple of weeks back. I froze when I saw 2 faint lines appear on the test and shouted Chris upstairs … Happy Father’s day you’re going to be a Dad again!! Not quite believing what the test was saying and with the test being so faint off I went round to my cousin Adelaide’s , the stick I’d just weed on in my pocket and showed it her to see if she could see what we was looking at. She confirmed she could see it faintly gave me another test to take and got the same result! Off I went home not quite believing that my dream of having a baby with Chris was coming true.

Just to be sure Chris was up at 5.30am the next morning to go and get some more tests and this time with it being the morning 2 solid lines appeared. From then it was all go … ringing the doctors to arrange the midwife and to discuss what I should do about the medication I take – I didn’t want to risk any harm to my baby.

With not having periods we were unsure on dates, when the midwife saw me and booked me in for my 1st scan I would either be around 8 or 12 weeks.

The day for my 1st scan arrived and nervously we went off to the hospital , laying on the bed my heart sunk as the ultra sound couldn’t pick anything up, until I had an internal – turns out I have a tilted uterus but there was my baby – 8 weeks and good strong heartbeat the feeling of dread turned into pure happiness – it was really happening we was having a baby.

I was booked back in for when I would be 12 weeks and up until then everything was fine that was until 2 days before my 12 week scan, I stood up on the Sunday evening to go up to bed to feel a gush and looked down to see blood seeping through my clothes and all over the sofa, not thinking twice we jumped in the car to a&e and waited to be seen. Still to this day we never got to find out why I bled, but I bled on a weekly basis till I was around 18 weeks – each time nothing wrong with baby but resulting in me having to go be checked over at the midwifes and then travel to the hospital for a anti d injection due to my blood group and being put on bed rest for a couple of days every week.

In between the bleeds I went for my 12 week scan, baby still being a pain and the position of my uterus they still couldn’t date me and I had to come back a week later which still took 2 attempts but we finally had a due date 27th February 2020, Baby was growing nice and a good strong heartbeat.

15th October comes and that Is when the real nightmare started, Off we went for my 20 week scan we were both so excited to find out what we was having and I felt on top of the world.

Straight away before the sonographer did the proper scan we asked her to look what gender our baby was … tears ran down by face when she said it’s a baby girl …. Then everything came crashing down like a ton of bricks, everything was fine on the scan - bar her femur measurement which was showing slightly smaller than the rest of her measurements. We had to be booked back in for the next day to go for a detailed scan at the fetal medicine department.

My heart broke as they scanned me and then told us that not only was her femur measuring short so was her arm, they couldn’t see the top of her head properly as she was actually stood up in me but they couldn’t see two white lines in her brain only one, but that could have been due to her position. Her nuchul fold was slightly enlarged, stomach was small and she only had one kidney.

How could my baby have all these problems that alone would be ok but all together pointed towards something more.

After a lot of consideration me and Chris agreed I would have a amniocentesis test to rule out any conditions and they got me in for a few days time.The anxiety I felt on top of my usual anxiety was crippling I was risking miscarriage for them to take fluid from my baby to test for chromosome issues.

The day of the test I could not have got through it without Chris by my side and the only upside to the day was thinking they spray glued my belly back together after having the needle .. Chris didn’t tell me for a while that it was to make the plaster stick properly as it needed to be covered properly to prevent infection. There was me telling people the hole from the needle must have been huge to be glued back together.

While all this was happening we had agreed a name for our baby – Darcie-Rae.

One week later I got a call from the fetal department – Darcie’s results were back and all my birthdays and Christmases came at once – she was clear of downs, Edwards and Patau’s syndrome and they would just need to monitor her growth. We knew she would be fine with one kidney and so what if she was a little on the short size she would be the most loved little girl.

I finally felt like I could finally enjoy my pregnancy, started to buy clothes, pushchair, moses basket my bump was certainly growing and I looked pregnant not that awkward in between stage where people wonder if you’ve put on weight or are pregnant. Me and Chris went to enjoy our night away in Skegness – we do it every year the same date in October to mark when we first got together, it was full of laughter and plans for our future with Darcie-Rae.

Monday came, back to reality both back at work, Chris away for the week and me and Archie at home alone for the week, when my phone rang. I recognised the number and wondered why the hospital was calling me – they didn’t need to see me till 15th November for another scan.

I received the news that Darcie had had her cells sent for further testing and something abnormal had come up, all the midwife could tell me was that it wasn’t looking to good , she had something flag up with chromosome 12 and I would need to attend Nottingham City genetics department in 2 day’s time.

Chris rushed home from working away and while trying to be positive couldn’t help but have that sinking feeling. All the while putting on a brave face for the kid’s we didn’t want them to know anything was wrong, they were all excited to have a new sister especially Archie – all his dreams had been answered!!

We went to the genetics appointment and I can honestly say from that day I have been living the worst nightmare, we got told our Beautiful Darcie-Rae had an extremely rare syndrome. That rare that there’s only around 500 cases worldwide and around a 1 in 12 million chance of happening. Darcie-Rae had a condition called Pallister Killian Syndrome – PKS for short. We were told with it being so rare that there wasn’t much research but the research that had been done meant Darcie would have severe intellectual development, extremely weak muscle tone, distinctive facial features and various other birth defects.

This also meant there was an 80% plus chance that Darcie-Rae would never walk, talk, hear or see. She would need 24/7 round the clock care on top of weekly tests and hospital appointments, risks of her being born and only making it for a few hours before her organs gave up and she would pass away. I couldn’t get my head around what I was hearing, how could our baby be so poorly. There could have been a slight chance she would have milder symptoms, but this was only a case seen in a couple of children and hadn’t been picked up till the child was around 1 year old and not reaching milestones. For Darcie’s symptoms to be picked up in her scan we had to accept she was on the highest end of severe and we had to leave hospital knowing we had to make the most difficult choice we would ever have to make. We had to decide if we risked putting Darcie-Rae through a life of pain and having a severely disabled child or ending her life and putting a stop to what would be a lifetime of suffering for Darcie.

We had a phone call arranged for 3 day’s time to see if we had any thoughts or made any decisions on what steps we were going to take next. Part of me had already died knowing what ever choice we made would cause so much pain and heartbreak for the rest of our life’s. The guilt of what we did will haunt me forever and after speaking to close family we made the utterly heart breaking decision we would end Darcie-Rae’s life to prevent her coming into this evil horrible world and live a life time of pain.

My Life will never be the same and on 8thNovember I had to attend the hospital to listen to the details of how they would end my pregnancy, I had to sign the forms to give the hospital permission to end my daughters life from that day I have felt like I have existed the only thing getting me through is Archie, Chris and close family and friends who knew the situation we was in.

12th November 2019 early in the morning I was admitted to Derby royal where I was sedated and the process started to end Darcie-Rae’s life, I had a needle again pushed through my stomach but this time into Darcie and she was injected with a drug to put her into cardiac arrest , my baby’s heart stopped within 10 minutes and then after a check an hour’s time later I was sent home to come back in 2 day’s time for when I would have to be induced and give birth to Darcie.

14th November 2019 the day I have constant flashbacks and nightmares from, the day I would meet my daughter the baby I had dreamed of but I wouldn’t be bringing my baby girl home, I would never be seeing my Darcie open her eyes or smile she would be born a stillborn. Darcie being Darcie didn’t make it easy for me and put me through a pretty rough labour and after having contractions all afternoon and a good solid 2-3 hours of contractions that didn’t even have 10 seconds between them all my contractions completely stopped! The midwife didn’t dare tell me I might have to start the process all over again when suddenly at exactly 25 weeks old with no contractions or pain Darcie-Rae Lillie Johnson entered the world sleeping. Born at 21.50pm weighing a chunky 2lb. She was taken away to be cleaned up while I delivered the placenta but even that wasn’t straight forward, my body couldn’t deliver the placenta with giving birth so early and when the midwife tried to pull it down it snapped away from the cord, meaning it was then all go and I was prepared for theatre. Epidural given I then had to manually have the placenta pulled out from the top of my stomach by a surgeon. A sight I’m sure Chris will never forget even after being warned he would have to leave theatre if he kept looking at what they we’re doing.

After theatre I finally got to see the most beautiful little girl I have ever laid eyes on – my Darcie-Rae with dark hair just like her dad and such beautiful small features it was hard to remember that she would have been so poorly if born alive.

I will forever be grateful for the Derby royal maternity team who gave us 6 days with Darcie staying in the stillborn suite, she slept peacefully by our sides giving us that precious time with our daughter we would never get again. Not only did they treat me with such thought and care they also treated Chris the same, not once was he put to one side we were both looked after with such compassion and care especially by Leesa Jones, Jenny Lovelace and Kerry. Darcie-Rae was treated like a princess never left alone, changed by the midwifes and watched and read to while me and Chris attended the registry office to register Darcie-Rae. You see she wasn’t just a late miscarriage, she wasn’t just a stillborn, she was the most special little girl who is registered just like the rest of us, she has an NHS number and a birth certificate.

We finally knew our time was coming to an end and seeing Darcie-Rae deteriorate we couldn’t let her suffer being with us anymore and made the heart breaking walk to the mortuary where we handed over our baby girl. We were never to see her face again apart from the few photos we had taken while with her.

Leaving the hospital later that day (20th October ) I felt like I would never leave the house again how could I ever face the world again , my body recovering from giving birth like any other woman but with no baby to take care off, to walk out that hospital with nothing but a box full of my baby’s handprints and clothes was worse than the pain of labour. I was empty I had nothing left inside me.

People sent messages and called but nothing was going to make those last couple of months any better and for people to tell me they knew how I felt as they had miscarried made me more upset and often angry because I knew that although any loss is devastating, they in a way had no choice but to deal with the card they was dealt, I had had to make the decision which had resulted in what happened to Darcie and that is something that will stay with me forever.

Back home I plunged into a world of darkness, I just existed to be there for Archie who finally after a month of living at my mum and dads came home. Me and Chris didn’t leave the house, didn’t eat, didn’t talk we were and still are numb with pain.

Fast forward to 16th December which was the day we say goodbye to Darcie-Rae her funeral was held at Mark-Eaton crematorium in the morning at 09.40am. With close family by our sides Chris carried our beautiful angel from the funeral car into the room, Faith Hill – “You will always be there” playing in the background. Darcie-Rae was given a simple but beautiful send off and my heart broke even more when those curtains closed. As a family Me, Chris, Tai, Kaydee and Archie went and placed an engraved petal on the memorial butterfly in the baby garden that was sent to us from Sands stillborn charity. That will be there forever for us to go and visit and I’m very thankful for the work they do.

Every day since has been a battle, the feeling of guilt, grief, emptiness and anxiety has been over whelming. I’m now being monitored for the early onset of PTSD and have started bereavement counselling to see if I can slowly get back on my feet, not for myself but Archie, Kaydee, Tai and Chris, who I couldn’t be without.

I wanted to tell Darcie-Rae’s story not for attention or sympathy but to show people how special my Baby girl is, why I am where I am with life and how when people say I’m the same as them and I can try again it simply isn’t that easy.

When I’m back on my feet I would love to do some fundraising to help others who may find themselves in the same nightmare as myself and Chris and to also raise awareness about Darcie-Rae’s condition.

Below is a couple of websites with more information about Pallister Killian Syndrome – unfortunately with it being so rare there isn’t much out there.

https://ghr.nlm.nih.gov/condition/pallister-killian-mosaic-syndrome

https://rarediseases.org/rare-diseases/pallister-killian-mosaic-syndrome/



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