Tag Archives: Miscarriage

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.

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