VOLUNTEERS NEEDED

VOLUNTEERS NEEDED

Hi everyone. I am looking for volunteers to help with a YouTube channel & Blog around the subject of baby loss. The channel and blog is relatively new and is run and influenced by people who have suffered the loss of a baby. There are so many ways you can get involved and all ideas welcome.

If you are interested and need more information on how to get involved please let me know you can do this by commenting on this blog post or messaging our facebook page (below).

www.facebook.com/BabyLossAIS

2 years on

Friday 13^th December 2013 was supposed to be one of the best days of my life, the day of my first 12 week scan. That morning I was so excited to see my little baby on the screen for the first time, but that was far from what happened. That day was the start of one hell of a journey.  

A long story short after that day I spent a very long 3 days in hospital and a few months down the line got told I had suffered as ‘Partial Molar Pregnancy’ you can read my full story on the Miscarriage Association website.  

www.miscarriageassociation.org.uk/personal_reflection/jades-story/

The purpose of this blog post ‘2 years on’ is to discuss my journey since that day till now. What it’s been like, how I have coped, my feelings now etc. I really hope people can relate to what I’ve been through and to those who have been through or are going through a similar situation to know they are not alone.

Since that very day things have never been the same, people always say ‘Things will get easier’, yes they will be good and bad days and it may get ‘easier’ but it will never be ‘easy’. There’s not a day that goes by where I don’t think about what happened and what could have been.  At the start I just felt like it was one thing after another and just as I started to come to terms with what has happened I had a phone call to tell me I had as molar pregnancy which just terrifying, as I had never heard of it before all sorts of things run through your mind. Luckily I did not have to have chemotherapy like some people have to go through, although I did have to do regular urine and blood samples which was a really scary thing as every time I was dreading the results and was just waiting for something else to go wrong. I was glad when that was all over!

This blog post is called ‘2 years on’ even saying that seems unreal. It is still as raw now as it was then. A horrible situation like losing a baby is something you will never forget, something that will always stay with you no matter what. As time goes on I have found ways to cope which I will explain later in this post. Although you learn how to keep a brave face and learn how to cope and get on with things, like I said you do get your bad days. For example signifying dates like the due date. For me it just makes me wonder what things would be like.

2 years on and I am now proud of where I have come, I have been able to finish university, got a good job etc. although I would trade all of that in any day to have my baby here. But most importantly I have used my horrible situation and done something positive out of it, by raising awareness and helping other people has really helped me cope with my loss. Since having the miscarriage/molar pregnancy I have been on a mission to raise awareness and break the taboo around the subject, but most importantly I want to help others feel less alone and help them through their loss, hence creating the YouTube channel, blog etc. I’m really thankful to all the people who have got involved so far and I really hope it will help them, like it does me and most importantly I hope our videos and blog posts help those who watch and read them.

Until you go through something like this you never know what it is like. This is why I think it is important people should be made aware of baby loss as it is more common than what people think.

Thank you all for reading, please like our Facebook page and follow us on twitter.

www.facebook.com/BabyLossAIS

www.twitter.com/BabyLossAIS

Also if you would like to help and get involved please click on the ‘Get Involved Tab’ at the top of the page. 

Baby Loss Awareness - the survey

Hi everyone,

I'm Nicola, another author on the blog and volunteer in the Baby Loss Awareness group, founded by Jade. I joined as a volunteer as instead of tirelessly googling for answers after my loss, I wanted to put my energy behind something very positive and hopefully reach out to women (and men) who needed or need help, should they find themselves in similar situations.

In the very early days, before any of our channels were live, Jade and I wanted to find out more about people in our situation. What are people looking for? Are people lacking in information? How were people cared for mentally in the aftermath?

So, we put together a short survey. Below is how we did it, and what we found out.

Background
100 respondents answered eight questions on experience of the loss of a baby or infant. Questions included what type of loss, what they looked for in the days after their loss, what information was useful/lacking, what the mental care was like and what people in our positions would like to see. At the time of writing, we are planning to conduct more in-depth interviews with those who have given permission. If you would like to speak with us, I will leave details at the end of this blogpost.

What did we find out?
Most of the results were not surprising. People went looking for both facts and information. Not unusual - having suffered two losses myself and having spoken to countless others who have sadly suffered the same, we look for answers and comfort. We want to know why and we want reassurance.

72 people went on to further comment on what they believed was lacking. Responses were very varied however a common answer was regarding molar pregnancies, which is something that our very own Jade sadly has experience with and, as a result, will be working on this. For those who suffered a molar pregnancy, they simply said that they could not find the information they wanted to about it; one woman even said that the medical staff where she was treated knew little about it. Another woman called for more awareness of molar.

Another, somewhat alarming, common response was that mental health and support was lacking. In fact, the majority of people found that they received no mental care, or the mental care that they did receive was lacking.

Losing a baby is one of the most traumatic things a woman can go through. I was sadly one of those who did not receive adequate mental care after both my miscarriages. I thought that I was just unlucky, but I was so sad to learn that it was true of others. I am lucky enough to be able to pay for private sessions with a psychologist but that's not the case for a lot of women. For those that reported receiving good mental care, this tended to be midwives who gave that much needed human touch. Out of those who commented further on this, a common response was "was offered none".

Due to my own experiences, I feel very strongly about strengthening the connection between physical and mental health; I hope that this blog and our YouTube channel can help with this. I will also be providing my own full story at a later date too.

The findings of the full report will be available soon to download as a pdf. Remember to subscribe for email updates, and like us on Facebook and Twitter (see right hand side) - we'd love for you to stay in touch! :)

If you are have not taken the survey and would like to share your story or if you simply want to speak with us further, you can request to join our private Facebook group of volunteers. We'd love to hear from you.

Skyler Hope Cook's Story

Friday 12th December 2014 – The day I found out I was expecting was the happiest day of my life but at the same time the scariest…. I had 6 months left in my apprenticeship, just got with the guy I’ve like for 7 years…. I was worried what people would say I was 18 and having a baby, something I’ve always dreamed of but didn’t think it would be so soon…..

So I booked an appointment with the GP and had it confirmed….

That night I told my mum, boyfriend and close friend and they was all so happy for me… I was over the moon

Wednesday 24th December 2014 – It was Christmas Eve and I had my first scan and I couldn’t wait…. My little koala was perfect and growing fine…. I was 9 weeks and 3 days… It was such an amazing moment seeing my baby on screen, it just made it more real…. And it couldn’t come any sooner.

Thursday 8th January 2015 – My first midwives appointment…. It was getting more and more real by the day… I got my yellow book. Now I knew it was really happening it really felt real…

Wednesday 14th January 2015 – I get to see my little koala bear on the screen again and couldn’t wait. I was 12weeks and 3 day… my baby was getting so big and everything was really good…. They did the Down syndrome screening to see if I was a low or high risk not that it would have bothered me….. That day I started to let people know my exciting news J

14 weeks to 19 weeks – I started to feel my little koala moving and kicking … it started with flutter, then got stronger and stronger…. It was the most amazing feeling in the world…

Tuesday 3rd March 2015 – My 20 weeks midwives appointment but was only 19 weeks and 2 days… all was fine…

Wednesday 4th March 2015 – The day I’ve been waiting for. The day I find out if I’m having a prince or a princess and I couldn’t wait… Finally 1.30pm came and my names was called …. I was so excited I laid on the bed, they put jelly on my belly and started my scan. The lady started taking measurements. After about 20/30 min she finally looked up and said it appears your baby if very small of the gestational age… but I was having a baby girl…..so she finished the scan and handed me over to the consultant where I had a really bad feeling…..

The consultant asked me to come in to the room where she sat me down and told me it wasn’t very good news…. She started to explain that my baby was really small and that there was abnormality in the fetal dopplers and that the umbilical artery doppler shows some reversed end diastolic flow. She wanted me to be put under fetal medicine unit and my scan would be on Friday at 3:20 but she also told me that she thought my princess wouldn’t survive till then, but there was nothing they could do it was just one of those thing of life….. I was gutted I couldn’t stop crying this was ment to be one of the happiest days of my life but was starting to turn in to the worse I just didn’t know what to do it didn’t make sense how they said I was going to loose my princess but yet I could feel her moving and everyday her kicks was getting stronger it just didn’t make sense…. But all I could do was hope they were wrong or my princess was going fight.

Friday 6th March 2015 – My first appointment with fetal medicine unit… 3:20 came and they call my name…. I was so scared they were going tell me I’ve lost my little princess….. He started to scan away and there she was, heart beating away…. Moving and kicking around …. I couldn’t have been happier….. But then he started to tell me how my princess was small with an absent flow in the umbilical artery and bilateral uterine artery notches, but everything else was normal apart from a single umbilical artery. He told me how he didn’t think she was a normal small baby and that he thinks this is because of a placenta problem or an underlying genetic problem.

He then offered me the amniocentesis to see if she had a genetic problem which I refused but he told me to think about it and he’ll see me in two weeks, but he didn’t think she will still have a beating heart then.

Friday 20th March 2015 – 21weeks and 5 days…. Fetal medicine- I was so worried she wasn’t going to be there but she was still with a strong beating heart and had grown she was now 10oz, she was very active with a normal AFI but there is now a reversed end diastolic flow in the umbilical artery.

The consultant was very honest with me and told me that he didn’t think she would survive long enough to keep achieve either a viable weight or gestation…. He then offered me a termination which I refused

They took my blood pressure and took bloods as I was at risk of getting PET… then arranged for me to have my blood pressure checked the following week, then my consultant to see me the week after that, then he would see me after the Easter holiday but if I was worried about anything like movement then just ring DAU.

The next two appointments went fine.

Tuesday 7th April 2015 – 24weeks and 2 days…. Fetal Medicine – My princess had put weight on but not a lot - she was now 13oz. We were now at the gestational age where we could deliver but she would not survive the delivery… so we agree to keep doing what we were doing and just keep a close eye on her. I was now going to be seeing fetal medicine weekly.

That night I when home and bought a heart Doppler so I could keep an eye on my princess on a daily basis.

Tuesday 14th April 2015 – 25weeks and 2 days…. Midwives - My 25 weeks check-up everything went fine we listened to heart beat which was very strong…. My little princess was a little fighter.

Fetal Medicine –The scan showed the Doppler’s continued to worsen and now the AFI was gradually reducing. He arranged to see me again next week but told me that he thinks she would die in this time.

Tuesday 21st April 2015 – 26 weeks and 2 days…. Midwives – everything was okay, heart still beating away…. She was really shocking people on how she was still going I just told them she’s my little fighter.

Fetal Medicine – Things were starting to get worse, she had only gained 1oz in weight over 2 weeks which is really poor… her movements on screen was really weak. The AFI was dropping and there was a pronounced reversed end diastolic flow. She was only weighing 390g and needed to be 500g to have a fighting chance…. He also told me we could induce labour but she would die from the stress and it would probably end up in a caesarean but I would be a classic caesarean, which would mean that for every baby I have I would have to have a caesarean or I might not even be able to have more children. We decided to wait enough week to see if she would grow any more…

Tuesday 28th April 2015 - 27weeks and 2 days…… Midwives – all was fine really strong heart beat and kicking around. She really was a little fighter….

Fetal Medicine – There had been virtually no growth in the last week. The Doppler’s remained very abnormal with pronounced reverses flow, significant redistribution and bilateral uterine artery notching consistent with severe uteroplacental disease and there was also very little fluid around my princess….

They had me talk to a neonatal lady so she could give me a better picture of what I would be dealing with if I was to deliver now….

The neonatal lady confirmed what fetal medicine had said and what was that she probably wouldn’t survive the delivery…. I asked her if my princess was to survive when what was he chance and she told me they were very slim, she told me that she as only ever seen 2 babies in her whole career at that weight survive and go home, but they had long term disability like cerebral palsy.

They also offered me a termination as they were worrying about my mental health because I was only 18 and going through this… but I rejected this offer…. She was my baby and this was her fight to fight….

I told them I wished to go away and think about these offers.

The next day I sat down and had a long think and spoke to my bloke and family and friends… I then made my decision that this was my daughter's fight and I wanted to leave it as her choice. If she wanted to fight she’ll fight and if she didn’t she’ll give up inside of me where she was safe…. If she was to go I would rather her go inside me where she’s safe and peaceful, not out here where doctors and midwives would have their hand all over her trying to put breathing tubes in her and that…..

But the day came………..

Friday the 1st May 2015 – I woke up and sensed something wasn’t right because every day for the last 8/9 weeks I woke up to her kicking me but I had nothing but one tiny movement, but that was at like 5am. I knew something wasn’t right so I got my heart Doppler and started looking for her heart beat. I was looking for a good 45 minutes, then my partner looked nothing…… deep down I knew my princess had lost her fight but hoping I was wrong. I rang DAU and they told me to come straight up…… when I arrived my consultant was waiting for me…. She took me straight round to the scan department where I let on the bed to hear my consultant tell me my baby was now a peace and now a sleeping beauty.

They then took me in to another room where they sat me down and explain what was going to happen. Then they gave me a tablet and told me the delivery suite would ring me Sunday morning to tell me when to come up.

I was devastated… I felt so numb…. I just kept holding my belly….. I didn’t know how to feel

Sunday 3th May 2015 - 10 am I had the phone call to make my way up to delivery suite….. It was about 11ish when I arrived and got put in to a room where I had a very nice midwife explain out they are going to induce me and then I’ll get to meet my little princess…… so avoiding the gory details, it was about 1pm when they started me off with the first set of tablets….. I started to contract about 4 ish then about 6:30 the pain was now unbearable so I was given paracetamol that did nothing so then I had oramorph which also did nothing…… so decided to go on gas and air which is quite good  after being in full labour for 2 hours and 29 minutes. Finally at 9.04pm, weighing 420 grams and 28 cm long I gave birth to my beautiful sleeping beauty…. She was so small yet so well developed….. She really amazed me…. She was perfect beyond compare…. And my love for her is out of this world…. It was such a surreal moment…. Later that night people came up to visit her….. We was moved round to the lavender suite with was more like a little flat which was nice…..

Anyway, long story short I had lot of people come and visit her in the 42 hour I had with her…..

Tuesday 5th May 2015 – This was one of the hardest days of my life…. I had to hand over my sleeping beauty knowing I would never see her again (well I thought I wouldn’t) …. It was so hard I didn’t understand why… you're meant to look after and protect your baby and be saying hello, not good bye…. Skyler was just “too perfect for this world” …..

Skyler Hope Cook, mummy loves you forever and always, my personal guardian angel.

Also we have a just giving page if anyone can donate we are raising money for sands
https://www.justgiving.com/swingforskylerhope

My Sleeping Beauty - By Shelby Rogers

Finding out I was pregnant again was amazing, I couldn't have been happier, it was amazing to know I had a life growing inside of me. I took a pregnancy test and two lines appeared, so I took another and another, all showing two lines so I decided to run to Tesco and buy a clearblue digital test. Yup, there it was '1-2weeks pregnant', but I still couldn't belive I was pregnant so I decided to pay for a scan. Although I knew I wouldn't be able to see much I wanted to be 100% sure and yup, there she was, a tiny dot on the screen .

I told work I was pregnant and asked them to keep the news between us until I was ready but that lasted less than a week. At 6/7weeks I became really ill and kept being sick. I ended up in hospital on a drip and having anti sickness injections when I was diagnosed with hyperemisis. I had a scan and sure enough she was there, her little heart beating away and moving around. Eventually I was sent home and back at work.

A few weeks later I went down hill again and sure enough, back in hospital, the anti sickness medication had stopped working. I was losing weight fast and had no energy at all. I took around 2 months off work and was in and out of hospital. I missed my 13 week scan so I had a private scan again which showed she was still growing and dancing away . My sickness was being managed by the tablets but I was still poorly. I went back to work and focused on my 7year old.

At around 17 weeks I had a 4d scan, it was amazing as I got to see my baby girl smiling, blowing kisses and covering her ears when her brother spoke. Her cheeky personality shone though and after that I felt her move more and more everyday, it was like she was dancing all the time.

At 18 weeks and 3 days I started getting pink discharge, I came out of the toilets at work and burst out crying so my colleagues drove me to the hospital, there they checked my baby's heartbeat and said I had a infection but all seemed ok.

The next morning I was bleeding so I went to the doctors again. The Dr checked my baby's heartbeat and assured my all was ok but she sent me back to the hospital to be seen as a precaution. They kept me in over night, checked my cervix and said all I was ok. They gave me another scan and there was my baby girl, strong heart beating, dancing and waving.

I was ok after that and for a few days I took it easy but at 19 weeks, on the Friday, I become really I'll. I was being sick and feeling hot and cold (this was the last time I'd feel Rose move).

At 19 weeks and 1 day all seemed ok and it felt like normal day.

At 3am, at 19 weeks and 2 days pregnant, I was woken to what felt like I was weeing myself. I got up and water and blood poured from me. I was alone with my older son and I was really scared so I got back in to bed and went to sleep. I don't know why I didn't ring an ambulance at that point, I think I must have been in shock, maybe by going to sleep I thought I'd wake up and it would be a dream.

At 9am that morning I passed a massive blood clot the size of my fist so at this point I rang the hospital. I went to the out of hours GP who I didn't feel were helping me so I sat and cried, then I rang NHS Direct who sent me ambulance. I sat in the Emergency Department waiting room for ages before going to the ward, it then took ages before a doctor saw me.

In the hospital they checked my cervix and told me I had an infection so administered antibiotics via an intravenous drip. Rose's heartbeat was super fast and I was told that was due to the infection.

The next day (now 19weeks and 3 days pregnant) the hospital scanned me and confirmed what I already knew, Rose had no water around her, the placenta was over my cervix and her heart was slowing.

They took me back to the ward and I remember closing the curtians, clapsing on the bed and screaming and crying. I could hear the older ladies saying things like 'poor girl'. Obviously they knew what had happened as they'd heard me talking on phone before my scan.

It took what seemed like forever before a nurse come and sat with me and said 'I am so sorry, the ultrasound lady has just told me'.

After a while I was moved into a private room a where a pregnant consultant came in and told me what was to happen next.

At 17:00 (5pm) I was moved down to the delivery suit and was given a tablet to start the labour.

A few hours later and it it was really hurting so I was given paracetamol but this didn't help. I remember bursting in to tears and telling them the that pain made it all so real, I was getting distressed so they put me on a morphine drip for the pain.

Hours and hours passed.

13/10/2015 I got up to use the toliet when I felt something heavy, alone and scared I held between my legs and pulled the emergency cord. I remember shaking and crying and trying to hold her in me, I made it to the bed and the midwives came in. They helped me up onto the bed and told me to open my legs I was so scared bit I did as I was told. Then I was told it was Rose coming and I needed to push, so shaking with tears streaming down my face I pushed my tiny girl out.

I remember saying I was trying to keep her in me. They cut the cord and asked if I wanted to hold her but I couldn't. I was too scared to see my sleeping baby and I wanted to stop crying before I held her, not that it would make a difference but I wouldn't want my son see me that sad so I didn't want my daughter to either, even though she was already gone.

The midwife hugged me and took Rose around the curtain while I tried to push out the placenta but it was stuck so the Midwife wrapped Rose up and I finally held my baby girl.

She was born asleep at 17:13. I held her and told her all the things I'd never get chance to.

A few hours later they came in with a surgeon and I had to put Rose down while the doctor tried to pull out the placenta, it took gas and air and a lot of pain but the doctor got it out even thought it was coming away in pieces.

After the doctor left I held my baby girl and told her how much I loved her.

I took 100s of photos and after while I had a shower while they took her away to do her hand, foot prints and organise a memory box for her.

After she come back I read to her and we spent the whole night together,ma whole night just me and my sleeping beauty Rose...

The next afternoon I said goodbye and got ready to leave the hospital empty handed.
It was like a nightmare, I can just remember walking and walking it was all a blur.

Leaving Rose that day was just as hard as finding out she was gone.

Our Little Girl Tia-Leigh by Karen Bell

This is our story of our little girl who we lost back in 2007. 

I found out I was pregnant with our Tia-leigh at 5 months we were so over joyed. Like all mothers to be you make all the appointments with the doctors and midwives. I went to all my appointments, got all my bloods taken to find out that I had low platelets, at that time they said it was fine but we had to have regular check-ups.

Every time I was checked, things didn't seem to change but when I went to the hospital i was seen by a doctor who had the wrong notes for me - they were for a Karen Bell who was 10 years older than me. I told her and she said it was fine. I was supposed to be checked every 2 weeks but she gave me an appointment for 1 month later, but at the time we never knew how serious low platelets were as no one had really explained what they were and the effects, so we thought nothing of it.

It was new year’s day 2007. I started bleeding, not much it was very little so we phoned the hospital. They said I had to go straight in - I got scans and all sorts of tests done, only to find out she had passed, we were so distraught then to find out I still had to give birth the natural way, was just so hard to do. Our daughters Danielle, Karlie, and Jade were also devastated.

When she was born I was by myself, as I gave birth I had to hold her head and wait for the nurse to come. It was so hard seeing her after what had happened, then having to leave hospital without her was just devastating. The staff at the QE in Gateshead were brilliant, so caring. They said they could pay for the funeral which we thought great as we couldn't really afford it but they said it had to be done their way which we didn't want, so we decided to do it ourselves. We went through the co-op at Blaydon. The under taker was lovely IRENE, we were lucky she helped us through every step. We told her we couldn't go and visit her at the hospital as the bloke at the morgue said she had deteriorated too far, so when Irene went to pick her up the first thing she did when she went and got her was phone us and say she is beautiful and to come and see her any time which we were overjoyed, knowing we could at least see her again.

We were there every day till she was laid to rest, then a couple of weeks after she was buried we went to visit her and some other poor soul had died. They opened up another grave and the council had taken everything off her grave, slung it to one side and completely covered her grave we couldn't even find it. We never even got an apology we thought what else can go wrong we just had to get on with our life without our little Tia.

We then we found out I was pregnant again we went to the hospital and found out we were having twins, but once again I had low platelets. We kept all appointments - on Christmas eve we went for a check-up and my platelets had dropped very low so we had to stay in and the twins were born a boy and a girl. I have always wanted a little boy as I had all girls and there he was.

We believe our little Tia gave her own life so we got our little boy, but we also got our precious little girl as well we were over the moon. We still haven't come to terms with losing our little girl, we never will. It still hurts as much now as it did then. Our lives still have an empty space which no one can fill.

Our little princess Tia-leigh will never be forgotten 

Remembering Our Babies

Going through the loss of a baby is one of the hardest and most horrible things any person can go through. The loss of a baby leaves you with lots of unexpected, frightening and often isolating emotions. Although our babies are always in our thoughts sometimes we are left with very little to remember them by, so creating memories and momentums in their memory can be a way of honouring our babies short lives. Creating these special memories can provide people with comfort and help with the grieving process. It is also a way of keep our babies memories alive, turning our grief into a memory and creating something a positive out of a heartbreaking situation. This video shows some photographs of the things other people have done in memory of their babies. From getting a tattoo to making keepsakes and much more. There are so many ways so please take a look. Thank you to all those who shared their lovely photos

https://youtu.be/iq_RS9tcMqI