Moving on…

Well, I must admit that I am pretty shocked that it was 3 moths ago that I posted anything related to my tragedy. The last 3 months (or so) I have been visiting Idrys’ resting place at least twice a week. It is about 25-mins away from where I live and I would spend at least 20 minutes or so when I am there. I love going there on my own. I have no idea why I go so often. But I do know that it is the only place I could go to and forget about all my troubles but the heartache doesn’t seem to get any lesser. The cemetery is my solace. I feel trapped in my world right now – a world where everything feels like they are against me and my family. A world where everything I touched turn into misery. I have not been myself since this all happened – can anyone blame me? Which means I have not been able to go back to work for the longest time. Ironically in a couple of months time I will be leaving the job that I could not (or do not have the strength) to go back to.

I’ve been dealing with my loss the last few months. Up until recently, when I started my therapy that is, I start to realise the amount of loss I have had to deal with since I was a teenager. They’re not just the loss of lives but also materials, jobs, relationships etc. Every loss I had experience had to happen in the most outrageous or tragic way with no explanation as to how I was at fault or to be blame for it. When I loss my dad at the age of 16 and losing my grandma in the same year, I had no support. No counselling, therapy etc. I was expected to ‘deal with it’. The same year I had to sit for my GCSEs and imagine how difficult and traumatising it was for me.I felt like it was a ‘punishment’ for me for being a naughty child (but was I even THAT naughty?).  I remembered one of my proudest moment living on this earth was my grandma told me once that my Dad had visited here and told her how proud he was of me – something he never said to me directly. But that was ok. It was enough to make me feel accepted and alive. Then he left me and my family. For good. Before I could get over that grief, my grandma passes away. Since then I just kept on going – probably that was the way my body could deal with that kind of shock and coping with a loss.

When my husband lost his job, it did not happen in a small scale. No. It had to happen again in the most brutal and tragic (plus humiliating) way. 20 years worth of hard work, sweat and determination went down the pan overnight because on one person’s reckless behaviour. The past 3 to 4 years we’ve been struggling as my husband could not find a job nor has he been bringing in any income. I never imagined life would get so difficult. But then tragedy strikes again with Idrys. This is the point that I start to question what was it that I had done so wrong that the universe is ‘punishing’ me and my family? To let us experience the heartbreak and trauma with Idrys was just ‘an icing on the cake’ which seriously have pushed me to my limits. I have nothing left in me to fight for anything. I am broken. Extremely broken. No amount of AD can help make me feel better on what happened. So universe, if you’re listening, please I beg you, as a mother who still has her two incredibly lively and energetic children, stop all the negative energy you’re sending to me and my family, look after my baby Idrys and just please give us back the life we used to have.

Mommy is broken my dear Idrys. You will forever be in my heart.

 

x

 

3 weeks on…edi

No one can tell you how to grieve for the loss of your baby. No can even tell you not to cry over the loss of your baby. But that’s exactly what happened to me. I was constantly told by an elderly relative to stop crying over the loss of my son. Even at the cemetary on the day we buried baby Idrys, she was there telling me not to cry. It has happened so often that I had to not cry and when I don’t cry, she then assumes I’m ok. I wish I could just scream at her and say “I am not ok!”. How can I be ok?? It’s only been 3 weeks since I said goodbye forever to my little boy. Is 3 weeks to soon to be ok? Who knows. There isn’t a set time in a grieving rule book to say you should be ok by a certain number of weeks, months or year….My husband seems ok but I know he’s not. But the fact that he doesn’t cry as much and seems ok makes me angry and frustrated. I don’t want to see him ok because that makes me feel like I need to move on and be ok too. And I do dread the day I am actually gonna be ok because I’m petrified that would make me forget baby Idrys and the whole experience. Why would I want to remember my dreaaful experience you may ask? Because to me that experience validated Idrys’s existence in this world albeit for a very short time.

The last 8 weeks had been torture. Having to pit on a brave face and not able to tell people I was pregnant and after losing him, not able to speak about our experience to most people as I would break down everytime I do.

My husband and I went out last night to see a movie. We figured that would take our mind off things for a couple of hours. BUT, everytime I laugh or enjoyed myself watching the movie, I felt the pain and heartbreak creeping back in. I felt sick for not feeling sad and crying. I was surrounded by pure guilt, as though I had forgotten my baby. Earlier today I decided to do something spontaneous and cisited a gallery. I was relieved that I got on the tube and got ro my destination. But when I gor there, I felt lost. I had no sense on direction or purpose for being there. I cried. all the way back to the train station and all the negativity that is happening in my life right now found their way into my head and emotions on top of all the hurtful and sad feelings I already have in me from losing baby Idrys.

Three weeks on and it still hasn’t got easier.

Hope you are happy where you are my beautiful boy.

Mommy is trying to stay strong for your brothers and missing you so much xxx

 

2 weeks and counting…..

It’s school half term this week & we figured a time away from working at our coffee shop & spend the day with our two boys may help to ease the pain. The last week was all about trying to get back to normality. We have slowly able to speak of our loss to other people including some of our customers.

It was hard at first, but I feel that if I don’t find the strength to talk about what has happened and speak of the loss of my baby Idrys, then will forever be forgotten. I want my son to be validated, by people around me, by the society. It’s absurd to think that the law do not allow babies born before 24 weeks gestation be recognised or be registered anywhere officially. Heartbreaking for parents like us whom had to lose our baby in such a horrible way.

Crying is something I do on a daily basis. There, four times a day is normal. Usually in my bedroom and at times when I can’t hold it together anymore in our shop, I would head for tge toilet and cry my heart out, and that’s because I miss him so much. Missing the fact that  we will never have the opportunity to see him grow but knew it wouldn’t have been possible due to his condition.

Today I tried my very best to be ok for my 2 other boys. So we took then for a trip to a safari. But what hit home was that at 3pm I remembered that it was the time when the hospital called me to go in as they have a bed available for me. And at around 5.30pm today reminded me of when I had him two weeks ago.

It’s been a really difficult recovery. I even had to go back to the a&e at the same hospital last Friday night due to a large clot and heavy bleeding. The saddest part was when my husband and I left the hospital in the early hours of the morning, remembering what had happened just over a week ago and leaving the hospital without our baby.

Although I was glad to see my husband and kids enjoying our trip today, deep down I know all of us are still very heartbroken.

Missing you baby Idrys x

Shine bright tonight my darling x

Forever in our heart

 

 

A week on….

I posted our news on Facebook on the same day we buried baby Idrys. I was quite reluctant at first, as for the last four weeks my husband and I found it difficult to talk about what was going on in our lives. We didn’t even have the strength to tell people that I was pregnant and that our baby was diagnosed with Edwards Syndrome.

I remember clearly on the day of my 12 week scan and the events that unfolded throughout the day – from the first scan with the sonographers (there were 2 of them), to another scan with a consultant, to having my blood tests done (for Down’s) to having my CVS testing done, I was most of the time on my own. I was on my own throughout the whole 5 hours at the hospital until I gave Lee, my husband, a call to meet me at the hospital. The moment I saw him, I burst into tears. We still did not know at this point that Idrys has Trisomy 18 but to be told that they can see from the NT scan that then thickness on the back of his neck is a lot thicker than it should be and the main ‘worry’ at that time according to the consultant is the fact that my baby may have develop something called ‘cystic hygroma’ and also some worrying level of ‘hydrops’ – none of which made any sense to me. All I knew was that my baby was very unwell.

I was in bits. And the first thing that came to my mind was to call my manager at work and inform her of my situation as there was no way I could get myself to go to work the next day after receiving such news. I could barely speak when I got her on the phone that I had to pass it on to my husband to do the talking and explained what had just happened.

The next four days we lived in hope. In hope that the scans were wrong and that we would get an ‘all-clear’ from the CVS test results. We were not sure where we were emotionally during that four days. Everything was a blur and nerve wrecking. I remember receiving a call from the midwife at 10am  and for some reason I knew she’d call me at 10am, no idea why. I had actually prepared myself mentally for the last 4 days and also expect to be given the results of my CVS test over the phone. But she asked if I could come in to the hospital with my husband to share the outcome of the test. You know that sinking feeling you have when you know something has gone or will go terribly wrong that it makes you feel sick? That’s how I felt. I arranged for an appointment at 4.30pm as that is when we close our (coffee) shop. We were so nervous throughout the day like you won’t believe.

When we arrived at the hospital, the midwife told us to wait for her at the ‘waiting room’ – the same room where I was sent to after being told that they’ve noticed some abnormalities with my baby four days ago. The midwife came back in to the room with some papers and the test results. It was not what we’d hope to hear. She showed us the results from the test and confirmed that our baby indeed has Edwards Syndrome. My husband and i burst into tears. My heart sank. Everything suddenly became bleak and dark. The midwife then shared with us some documents with information on Trisomy 18. She also then explained what could happen next and the options available to us and none of which were good. Within less than an hour of receiving the news, and at this point we thought it was our ONLY option, an appointment was booked for me to have a medical termination the following Weds. I could not process what just happened. How do you accept the news that your baby has a fatal condition and will eventually (and rather soon) passes away? We were both in shock, and left the hospital in pieces. I was very very sad. I still remember us walking out of the antenatal ward surrounded by other expectant mothers carrying a healthy baby and felt so rejected and judged. I’m sure that was not the case, but we felt like we don’t deserve to be there amongst other expectant parents. The same feeling I had when my GP told me that I was and should still be entitled to my maternity exemption card for as long as I remained pregnant. It’s funny as when I was told of Idrys’ condition, I assumed my rights as a pregnant woman was taken away from me as I was carrying a child with a fatal condition. I felt like I don’t deserve to have any pregnancy rights as I knew my baby boy will leave me and our family soon.

I still have the same emotions now as to how I was when I had my 12 weeks scan. It’s a lot worse obviously since losing him. I am confused, upset, heartbroken, frustrated, disappointed, ruined and absolutely broken. Everything doesn’t seem real. I would sit in my car and cry as I used to. I did that a lot between the time of receiving the news to losing him. It was my moment with my unborn son when there was no one around, I would speak and ask for forgiveness from him and the Almighthy. I prayed that he would come out of me naturally so that I do not have to make any heartbreaking decision for him. It was tough. And it is still tough. A week on and the pain is still very much hurting me and my husband.

Sleep tight tonight my baby boy. Daddy & I and your brothers have not stopped crying since you left us. We even cried when you were still with us. Mommy’s certain you are being taken care of in Heaven, where you belong my baby.

You will never be forgotten and forever will be missed. Forever in our heart baby Idrys x

 

 

Daddy’s story on losing our little baby

Edwards Syndrome

I just wanted to post something from a fathers perspective. Our little man Idrys showed anomalies on the 12 week scan back in early January so the doctors advised the CVS. We went ahead and then faced the agonising 3 day wait. The results came back positive for Trisomy 18 and we were devastated. Truly one of those things you think can never happen to you. The hospital were trying to arrange a medical termination for the same week, but we wanted to live with the news and do our own research to find out everything we could. We quickly discovered that there were no good options when it comes to Edwards Syndrome. We thought it the least we could do was to get a second opinion, we saw a private doctor a week after the initial results. We saw a scan of our baby where he pointed out excess fluid under the skin in most places on his body, as well as an abnormal heart. The doctor was very frank with us, and as harsh as it was, I think we needed to be told straight. He basically said that the outlook for our baby was ‘dreadful’. With Hydrops, cystic hygroma, abnormal heart and trisomy 18 (all are related) we really felt that we had all the facts we needed and the only heartbreaking decision was how to go about it.
We read a lot on surgical vs medical and came to the conclusion that at 16 weeks surgical was easier for my wife but far less dignified for our little man. My wife, being exceptionally brave took the option of medical, putting baby first and feeling like it was the least we could do for him.
She took the first medication last Monday and then we went in on last Wednesday 3rd Feb. Coincidentally my wife started having contractions around an hour before we went in and they gradually became more frequent and within the hours he had delivered baby Idrys. It was a very surreal and heartbreaking experience and despite all of his health problems he looked perfect to us. After a couple of hours recovery for my wife, they asked if we would like to see him again and we really wanted to. They brought him back for us, but in a plastic container. At the time, we were still so in shock, we just stared at him, mesmerised, having a rare glimpse at something many never get to see, a baby at only 16 weeks already a perfectly formed (despite being very poorly) human being.
My only regret is that we never touched him, in hindsight I blame the hospital for the way they presented him. Next to his placenta, there was still blood in the container, it’s not a situation where you feel like picking baby up, although we did take some pictures. Having read a few other posts where babies were presented to their parents, I feel our hospital should of presented him to us in a much more humane way so we could enjoy our only moments with him more. It was all so clinical, they even referred to him as ‘product’. We are definitely filing a complaint about this.
Two days later, on Friday 5th Feb 2016 we had a private burial for Idrys which was very hard to do, but also the perfect way to say goodbye. We already have two boys aged 6 & 7 and they also had the chance to say goodbye to their brother. I actually got to place Idrys in his final resting place and I do find some small comfort in knowing I was the last person to hold him.

If anyone has any questions, please ask. We would love to be able to help anyone else going through such a traumatic experience. Thanks for reading.

How about daddy?

If like me, those who had gone through a similar diagnose of Edwards Syndrome, you may have already searched the internet for some kind of support and answers. Chances are you will stumble upon forums, chat groups etc on parents sharing their story and supporting other parents. Nonetheless no one will understand the level of pain you endure as we are all different individuals.

I do not want to ignore nor forget that my husband shares the same heartache as I too. Never have I witnessed the extreme sadness and pain in his eyes and especially after he laid our baby boy to rest. He was a broken man. What I really want to highlight in our blog is no matter what age your baby was born/died, either in your womb, full term etc, the pain is just as deep. Dads experience the pain too especially when the baby is wanted. I knew how he tried to ‘detach’ himself from the situation at first, but you can’t. You just can’t because for dads’, they are losing their precious baby too.

It’s hard for us not to talk about it. We talked about it right from when we were told the news for the very first time. We still cry every night before we go to sleep. We knew there was nothing we could do or have done. The impact of losing a child happens to both parents, both mothers and fathers.  Of course as a mother I would be suffering different due to pregnancy hormones etc but I also acknowledge that my husband has a strong sense of parental responsibility and care towards our unborn son. Both equally painful and heartbreaking to live with. Living to know that you will lose you child no matter what you do is just horrifying and immensely unbearable.

Daddy is doing the best he can to get through this, Idrys. We all are. There is no way you will be forgotten. We are hoping we can through this pain for losing you by remembering you in every way possible. Even your brothers are missing you.

Sleep tight our beautiful boy x

What happens next?

(Please note that the content of this post may be disturbing for some, so please only read if you are not faint-hearted).

It’s only been a few days since we lost our boy Idrys. And the pain is still very much the same since the day we were told he had Edwards Syndrome. The last few days, especially after his burial, my husband and I started to look back at our ‘traumatic’ experience at the hospital.

Not long after I was admitted, I started having strong labour contractions. I did not realise they were contractions until I asked my friend to timed me. I asked the ‘midwife’ who was assigned to look after me if I should be getting contractions, with the fact that I had not taken any medical termination pills and she looked at me and kept saying “it’s normal”. Normal? If so, should she be telling me that I am already in labour and getting me ready to give birth to my unborn son? She only later came back (20 mins later), to instal the IV tube in my arm in case something goes horribly wrong and I may need a blood transfusion or they need to top up my liquid due to dehydration. I was certain of how careless and inexperience she was as she kept proving my arm and ‘stabbed’ me twice and left me in pain whilst having my contractions. As her mission failed she then left me and said “I’ll have to get one of the doctors to do it. Your veins are too thin for me”. What a thing to say to someone who is in labour and about to experience one of the saddest moment of her life? I was not there because I wanted to ‘get rid’ of my son. I was there because I was trying to do the best for him as he was terribly ill. It was a WANTED pregnancy. Why was I and my husband treated as though we were to abort an unwanted baby?

When my water finally broke after an hour, the ‘midwife’ was no where in sight, W had to screamed for her to bring us in the commode. I was told to ‘just sit on it’ until baby passes. And then she left us again, this time in the toilet. I could then feel something was coming out of me. I was screaming for the midwife and hanging on to my husband who was also quite broken at this point. Still no midwife. I saw my baby was half way out of me. I saw his head and arm but that was too much for me and my husband to witnessed all by ourselves. Another splashed and the baby was out. It was at this point, we both yelled for the midwife. And my friend had to go out twice looking for a hospital personnel who may be able to help. The midwife finally came back afterwards and with my baby in the kidney tray and still attached to his umbilical cord, my tearful self asked her to help and release him. She said she wasn’t sure what to do and looked at my husband asking him what to do. I sent her off to look for a doctor for me as she proved to be extremely useless and she said there is no doctor available at that time. I then asked her to bring in another colleague (midwife) instead. And what a difference that made as the her colleague knew exactly what to do. She brought in a pair of scissors and helped my cut the umbilical cord and released my baby. That’s all that was needed to be done. I then had to wait for my placenta to be delivered naturally. How can a careless, inexperience midwife be allowed to care for someone in our situation?

The next trauma was when we asked to see our baby. I was told by the doctor that the baby will be delivered to us in a container. I had no idea how bad it was going to be. When the same unhelpful midwife came back with a round plastic container, I was already heartbroken. She left the container which was closed with a lid on my bed. Please bear in mind how already broken and fragile we were at this point. When we opened the lid, there he was, our baby Idrys, still covered in blood and laying down sleeping next to his placenta. We were gobsmacked with the way he was presented to us and shocked to the point that we could not get ourselves to even hold him for one last time. How can a hospital be so clinical and insensitive to parents like us that that could not even give us a little bit of dignity or comfort even to the last moments we had with our baby? How hard could it be to try and wrap our baby in a towel or put it in a clean basket after what we had just gone through? That was our only one regret. Yes it will haunt us for the rest f our lives but given the situation, any parent whom had just gone through our horrifying experience may have feel the same way.

There is also a huge questions mark on why parents going through the same situation as us were not placed in a separate area to those who were at the hospital to ‘get rid’ of their unwanted baby. We wanted our baby. And yes we should be treated with extra care and sensitivity. We were not hoping to be in and out and forget out baby. We were there to deliver our baby in the most dignified way and especially that the last and very least we could do for our unborn son. Don’t hospital get that? Having said that my husband and I have read posts where some hospitals do make the effort and gave parents hand and foot prints, helped and dressed the baby and even delivered the baby in a moses basket. Our was delivered in a PLASTIC CONTAINER! So hurtful, so appalling.

So sorry Idrys. We were in shock. We hope you forgive us and in time this pain and regret will go away. However we are glad we found a beautiful place as your final resting place and that daddy was the last person who put you in your grave and the last person to stroke you when you left us to sleep peacefully forever.

Forever in our heart x

IDRYS – 03.02.16

 

Living and coping with a sad news

No one can quite understand the pain of losing a child, unborn or alive, especially when he or she is so wanted, until you experience it yourself.

Four weeks ago, during my routine 12 weeks scan, we were told our baby has a condition known as ‘Edwards Syndrome’ or Trisomy 18. This is a rare but fatal condition which happens to 1 in every 3000 pregnancies. It is kind of common but it is a condition that people don’t talk or know about – until it happens to them or someone they know.

The last four weeks our lives have been turned upside down and filled with heartbreak, pain, confusion & the sense of helplessness. We were frustrated.  We tried our best during those few weeks seeking for answers & opinions from various medical professionals and religious experts, and the options presented to us were almost next to none. I was also extremely saddened with the fact that my husband nor our two boys (aged 6 & 7) had not had the opportunity to ‘meet’ the baby as they were unable to attend any of my scans. See, I bled throughout my pregnancy right from when I first found found out I was pregnant at 5 weeks + 3 days. I’ve ‘met’ my baby 3 times including my 12 week scan (plus two emergency scans due to bleeding) and witnessed his heart beating. Those were the moments when I started to ‘bond’ with my unborn baby. To see his heart beating at every scan was enough for me to instantly want to ‘protect’ and do what I can for him, even though he was still in my womb. I then booked for our family to have a scan at a private clinic as the NHS would only let you have one at your 12 week and the next when you are 20 weeks pregnant. At this point I had no idea why I wanted to have a scan. But the lady at the clinic was so understanding and sympathetic and understand the situation I was in so she booked me to have a ‘reassurance scan’ the very next day after I called. I was then 14 weeks pregnant and had cancelled a medical termination appointment booked by the hospital. I was not ready to say goodbye to my son. At the scan, we were met by the head consultant at the clinic and when he saw the scan he instantly told us the various abnormalities with our baby. My other children were there too. They knew what was going on and I’m glad they get to ‘meet’ their little brother. the consultant/doctor then suggested that he speaks to us privately in his office without the presence of our 2 children. There was no easy way but he told us exactly what he thinks based on what he saw. Coming from an experienced medical professional, when we were told that there is basically ‘no hope’ for our unborn baby, what were we left to do? I was even told to consider having a surgical rather than a medical termination, if that’s the decision I would eventually make, so that I do not have a traumatic experience. We left the clinic feeling heartbroken again. At this stage, we were two broken parents living in hope that everything was just a bad dream.

I even went back to the hospital asking for more questions. Questions like “how accurate is the CVS test?”, “what type of T18 does my baby suffers from? Full T18? Mosaic”?, “how different are the termination process at different pregnancy stages?”. In the end I got the midwife to agree for me to have another scan with a consultant at the hospital when I am 16 weeks + 2days for one final assessment of my son’s condition.

But there was nothing we could do to help our unborn son. It was a matter of either waiting for him to ‘pass away’ peacefully in my womb or if he survives to full term, passes away at birth. And we also had to live thinking if he actually survives birth, he will be severely disabled with many abnormalities and may live for a few weeks and in very rare cases Edward Syndrome babies can survive past a year. These are the harsh realities for babies diagnosed with this horrible condition and the agonising decisions are left to the parents, all the more difficult because there are no ‘good’ options.

We’ve been grieving the last 4 weeks in the best way we could, and today when we buried our son, proved to be one of the hardest, saddest and most painful things we’ve ever had to do as parents. Many don’t realise that at 16 weeks, a baby has already developed arms, legs, fingers, toes etc. A proper little person. And what a beautiful boy he was. This is one of the reasons why we wanted to treat him with dignity and requested to at least register his death somewhere. We could not even officially write his name down anywhere. According to the British law, babies born before 24 weeks cannot be registered. I find this quite appalling as knowing that babies by around 12 weeks have started to look like a proper baby, parents still not given the rights or privillege to have an official document to remember their baby. It’s as though a baby that dies before 24 weeks does not matter or treated like they never existed.
We believe that he is at peace now & is in being cared for in Heaven.
And with this I would also like to raise an awareness of Edwards Sydrome/ Trisomy 18 & the impact it has on families affected by it. No words can explain how anyone affected by it live through it. Whatever decision the parents made are so personal and individual to them. So was ours. We cry every night since our baby Idrys passes away sleeping on 3rd Feb 2016. For some reason, perhaps with the power of the AlMighty, we and the baby knew that was the day he was going straight back to heaven as I was meant to be admitted that day. The same day I also booked to have my final scan at 16 weeks + 2 days with a senior consultant at the hospital. Baby Idrys helped me giving birth to him painless, quick and trauma-free. I was not even given any medical termination to give birth to him. He knew. He knew he was loved but also knew we had to let him go. So he went before we made any moves to save us the heartache. Our hearts still aching for losing you my precious son.

We already planned to have a funeral for him and bury him a beautiful cemetary we found near us. As much as it broke our heart on the day we collected his body from the hospital right to the time we buried him (daddy did with the help of the cemetery official), we are glad that we have found a wonderful place for our baby’s final resting place. A comfort if nothing else to know that we have a place we can go to when we’re missing him so much.

Rest in peace baby Idrys. Mommy, daddy & your brothers love you so much. We are missing you terribly already.

For other parents out there who are affected by this heartbreaking situation, please remember there are many other parents in a similar situation out there. We re still grieving but my husband and I also welcome anyone affected by this to get in contact if you would like to have a chat or have any questions. Losing a child is never easy – unborn or alive. Take care & love each other.

More information on  Edwards Syndrome & Trisomy 18

People and charities I spoke to for support:

ARC –ARC

SOFT – SOFT

Children of Jannah –Children of Jannah