Tag Archives: losing a baby

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.